Christmas Came Early

This has been an interesting week. I feel like I'm on a see-saw. See-saws always scared me when I was a child because the bigger kids would push up or bump down hard on their end and I, younger, smaller and much more of a crybaby than my peers, would go flying off of my end. I always thought I was the only wimpy kid afraid of the see-saw, but now that I am a parent I look around playgrounds and you know what? They don't have see-saws anymore. So I guess I wasn't the only one.

Last weekend, Bee came down with a terrible cold. When she gets sick, we are clued in before she's even symptomatic by how clingy she gets. "I need you, Mama," she says over and over, trying to melt into my lap. The only way she could get any closer to me when she's feeling clingy would be if she unzipped my skin and snuggled in with my bones. I said that to her once and now she's always asking, "Where are your bones? I want to see your bones, Mama."

Soon she was milking it. Sick enough to stay home from school but just well enough to know how to get whatever she wanted from us by being both adorable and manipulative, she bundled up in a giant skull-print bathrobe and wandered around sighing and saying "Mama, I don't feel very well today." She and Johnny and Teeny piled up on the couch, watched lots of Sesame Street and read a zillion books (including Llama Llama Home with Mama, which our PT brought for her and which I recommend to any mama of sick kiddos). She went through so many tissues that her nose was angry and red. We glopped the Vaseline on her nose and the Vicks on her chest and she was in fairly good spirits about the whole thing. It helped that we made cupcakes and she started to drink tea like Mama. It was pretty cute.








It was cute, that is, until everyone else started to get sick too. By Monday morning, it was clear that Teeny was next. She barely made it through her morning OT and we canceled her PT, but she had a pediatric ophthalmologist appointment down in Tribeca that we could not reschedule. I didn't want to take a sick baby on the subway, so we all piled into the car. While Teeny and I were seeing the doctor, Thora took a badly needed nap and Johnny sat in the car with her, double parked, sipping coffee and reading a book.

I made this appointment for Teeny because I noticed that most other kids I've come across with cerebellar issues have poor vision. Many are farsighted and wear glasses before their first birthday. Others have had nystagmus or strabismus surgery in infancy. I didn't know what these things were two months ago, but now I wanted to rule them out. Teeny has big beautiful eyes that follow you wherever you go, and I didn't think there was anything wrong with them but I wanted to be sure.

A lot of people have asked me how an ophthalmologist can evaluate a baby's vision, so I will tell you. First, we talked about her diagnosis. He seemed completely unshocked, nodding his head as I related my concerns, which made me wonder about the patients he normally sees. Then he got to work.

He did three main things. One, he dimmed the lights and got out all kinds of toys with bright and flashing lights. He shook them, waved them up and down and from side to side and made noise with them to see if her eyes followed them. There were toys stationed in corners of the room, for example, a duck was perched up high on a shelf and it flapped its wings and squawked when the assistant flipped a switch. When Teeny looked up or over at any of these things, the doctor peered into her eyes with his little instrument, which had its own lights and Sesame Street stickers on it, so she wasn't bothered. Then he put drops in her eyes to dilate her pupils. She didn't love this part, so I nursed her while we waited a few minutes for it to take effect. Then another assistant used a hand-held version of the same machine that my eye doctor uses on mine to get a baseline assessment of her vision. As it zeroed in and made weird noises, the assistant sang Twinkle Twinkle Little Star and made twinkling stars with her hand. I'd say Teeny barely noticed the big metal Thing in her face. And finally, the doctor used the same toys he used at the beginning to have her look at him while he tested various lenses in front of each eye. Then he smiled and looked at me. "Perfect!" he said. "She's got perfect vision, and beautiful eyes." He paused. "A little therapy, and I betcha she'll be fine overall." I wasn't as optimistic, so I raced home and posted to the group about what the doctor said. Lots of parents reassured me right away. "I'd say you're in the clear," wrote one. When I saw that, I breathed a little more easily. I usually do trust doctors, but I sometimes believe moms a little bit more.

On Tuesday, I got a very exciting email. A week or so earlier, I'd sent a copy of Teeny's MRI images to a high school classmate of mine who is a pediatric neurosurgeon. I didn't want to bother him because I knew she was not a likely surgical candidate, but as it turns out, his mom and my aunt are best pals, so I was getting lots of pressure to reach out. I'm so glad I did, because he wrote me saying he presented her images at a departmental conference and they caught the eye of some experts. He connected me with a colleague of his who sent the images to a brain geneticist on the other side of the country who hypothesized excitedly that it could be some kind of genetic thing related to several specific proteins that he wanted to test for -- all WAY above my head. The possible diagnosis he cited is not even Google-able. I read the email chain a hundred times and looked up every word I didn't understand and I still have no idea what any of it could mean. But when I heard back from the colleague, he said he'd like to explore this on a research basis and that it could take a long time to figure out but that if anyone could, it's this fellow he knows on the west coast. I felt encouraged that someone was interested enough to really try to pinpoint what happened to her and what we can do for her. So we'll see what comes of that.

A day later, we had an appointment with a developmental pediatrician. This was approved and paid for by Early Intervention, but I didn't really know exactly what a developmental pediatrician was or what would happen when we saw her, so I looked it up. A developmental pediatrician is the kind of doctor who helps you determine a diagnosis of a developmental disability or test for specific developmental concerns. This doctor had a very strong reputation so I was glad to be seeing her, but we already had a working diagnosis, Congenital Anomaly of the Brain; or more specifically, cerebellar hypoplasia. So she and her team of pediatric residents were going to do an evaluation to test Teeny's cognitive abilities and to see if she qualified for Special Instruction.

I worried because by Wednesday morning Teeny was really sick with exactly what Bee had. I wasn't sure she would be at her best for an evaluation and I was even less sure that the doctor would be thrilled to have a sick and feverish baby in her office. But I called first thing in the morning to let then know what was happening, and no one called back to cancel or reschedule so we went.

I was nervous. I had a little lump in my throat as we waited because this was it, the first evaluation of Teeny's cognitive ability capacity since the MRI. We had one before then, and she tested within the average range, but I needed reassurance. People tend not to believe the severity of Teeny's diagnosis because she doesn't "look" it. She has no facial characteristic that you might think someone with a brain injury would have. She doesn't make weird sounds or do anything out of the ordinary except look wobbly and unsteady when she moves. So I feared that the first evaluator, who saw her long before we got any kind of diagnosis, might have gone easy on her or not looked for specific things that she might have, had she known what she was really dealing with.

More than anything else, I want Teeny to be okay cognitively. I know I don't get to decide what happens to her, I know it's beyond my control. But I can't help trying to make little deals with this demon Cerebellar Hypoplasia in my head. I try to negotiate: "Fine, if she has to walk with a walker or with braces, fine fine. If she needs help learning, fine. If she doesn't become an Olympic gymnast or a brain surgeon, fine. But please, please don't let her be..." and I can't finish the sentence, even in my head.  "You know. Please don't let her be that word that we can't say anymore. Please don't let her be that."

When we were called, we were led to a playroom that looked like all the other evaluation rooms we've seen so far. There was a little table and a few little chairs in the center and toys scattered around the periphery. The doctor, a thin, professionally dressed woman with a big diamond ring and a crisp British accent opened a closet door and got out the same rainbow colored mat we have at home and tossed a few toys on it. Teeny was tired but interested. I sat on the mat with her to wipe her horribly runny nose, one hand on her back to keep her from falling over. There were two pediatric residents managing the paperwork, sitting awkwardly in two of the little chairs, clipboards balanced in their laps. We all chatted briefly about her diagnosis and medical history. I babbled on about the research I've been doing and about the various experts I've been in contact with and I asked her what she knew about cerebellar hypoplasia. She said very quickly that she was sure I knew more than she did specifically, but she talked about some other patients she'd evaluated and colleagues of hers we might see. Then she took off her heels and squatted down next to Teeny and started the evaluation. She picked up a plastic toy with buttons in the shapes of farm animals. Every button played a different song. She pressed the cow and it played Twinkle Twinkle Little Star. She pressed the duck, and it played Old MacDonald. She held it out to Teeny, who poked a finger at the cow, and after a moment, at the duck. "Good job, Teeny!" the doctor exclaimed, and took the toy away. She picked up a baby doll and a small plastic bottle and offered them to my daughter, who took the bottle and held it to her own mouth right away. A few seconds later she took the baby doll into her arms and, to my amazement because she's never played with a baby doll before, she held the doll to her chest and offered it the bottle. A collective Awwww rose up from all the adults in the room, who, for all their impressive specialties, board certifications and letters after their names, were still not impervious to the cuteness and charm of my little girl. The doctor leaned in to one of the residents and murmured, "Give her full credit for that one."

And so it went, for nearly an hour and a half. She pulled out picture books and asked Teeny to point to specific things: cat, apple, car, baby. She gave her a toy and asked for it back. "Give me?" she asked, again and again. Teeny looked at her blankly. She procured a set of plastic cups and offered them to my girl, who grabbed them and happily banged them together. The doctor was trying to get her to transfer them from one hand to the other, which I knew she could do easily, but she was much more interested in making noise so she kept banging them together and squealing with delight. After a moment, she dropped one and transferred the other from one hand to the other. "You did it!" cried the doctor, who suddenly seemed as invested as I was in seeing Teeny succeed. She handed her a few small objects - Lego pieces, a plastic coin - and asked her to put them in the cup. "Put in?" she asked, in her sharp British accent. Teeny has been practicing this one at home every day but with bigger toys and bigger containers, so she had trouble at first, but she kept at it until she got them all in. "Look how hard she's trying!" the doctor said, and I heard the admiration in her voice. "She just doesn't give up, does she?" Nope, she sure doesn't.

As we went through the rest of the test, the doctor asked me a zillion questions about what Teeny can and can't do. She asked some of the same questions everyone asks: Does she gag when she eats? (no) Does she fuss in the bath? (no) When did you first notice something amiss? (right away) Any documented history of learning disabilities? (no) Can she play peekaboo? (yes) Feed herself with her hands? (yes) With a pincer grasp? (sort of) With a spoon? (no) Does she wave hello and goodbye? (yes) Nod her head yes? (sometimes) Do any sign language? (yes) Look around for her sister when you say "Where's Bee?" (no) Have any words? (yes) Say Mama? (no) She can't scribble, can she? (Oh, yes, she can!) And so on.

Then she put Teeny on her back and started stretching and pulling her to evaluate her tone. The cognitive part of the test was over, and my baby was exhausted. After two minutes of being handled, she began to protest. I took her in my arms and offered her milk; she was asleep in thirty seconds.

I wasn't going to waste any time though, so I pulled out my notebook and asked some questions of my own. I asked first about her overall cognitive ability, and the doctor said that even without adding up the scores of the tests we'd just done, she was confident that Teeny was normal and that her tests would all be within normal limits. I thought about the bargain I'd been trying to strike with the demon in my head and I needed more clarification. I had to know. So I said "You're telling me then, that she isn't, you know... retarded?" She looked at me quickly and said "Well we don't say that anymore, at least not clinically." And then under her breath she added, "Though we do still say it colloquially."

I waited.

"No," she said, "I definitely don't see any signs of that in Teeny."

She did say that her scores and her cognitive ability itself would be affected by her significant motor delays. For example, she said, you can tell she knows that she's supposed to stack these blocks, and she wants to do it, but she can't physically. This is very frustrating for Teeny and the longer her motor skills are behind, the more likely her cognitive development will be slowed too. We had heard the same thing from the psychologist who did her first developmental evaluation, so I wasn't surprised. For this reason, the doctor continued, she would be recommending Special Instruction. Not because she needed it developmentally, but because it could only help her, based on her medical diagnosis. "But EI will see from the scores that she doesn't really need it," she warned, "so you may not get much." This was the same warning we got from the speech evaluator, who recommended speech therapy on the same basis. I nodded, understanding that this was the best kind of bad news a mom can get, and said we'd just see what the EIOD thought.

Then I asked about autism spectrum disorders since I know they are highly associated with cerebellar hypoplasia. I barely got the question out when she cut me off. "No." She said. "But wait, I've read that--" "No!" She said again. "That is one thing you do not have to worry about." And she listed ten things about Teeny that proved to her that she was absolutely not on the spectrum. "But I read that you can't even tell until kids are two or three sometimes--" I started again and again she cut me off. "No. Just, no." I smiled, totally relieved, and went on to my next question. She sat on a tiny chair, one leg crossed over the other, and listened. She answered everything patiently, gave me her medical opinions, talked about other patients she'd seen, referred me to other experts, and was generally very absorbed in what we were doing until all of a sudden something somewhere beeped and there was a rush of iPhones and watches and shuffling of papers and they were late for their next meeting. I collected all Teeny's wadded up tissues and our bags and that was that.

I felt great after that. Christmas had come early for me. My daughter had a chance at a regular life. She was cognitively normal. The rest we could handle. I did a happy dance and told everyone who would listen. I even lifted my do-not-discuss-at-work ban. I got more and more focused on her therapies and getting her all the services we could cram into her increasingly busy schedule. But Teeny got sicker and sicker. This was the first week of her increased PT and OT and I hated to have her miss a single session, especially after hearing again that getting her motor skills up to where they should be is the best way to help her cognitively. So I tried to push her through her therapies, but she just wasn't having it. During one PT session, she wailed the entire time. The PT looked at me helplessly and said, "I think she's had enough." I glanced at the clock and opened my mouth to protest. After all, we had ten minutes left! But Johnny took me aside gently and said, "Aimee, look at her. We have to stop." I looked at her. The poor girl had glassy, bloodshot eyes and a runny nose. in the past 48 hours, her fever had been up and down. Her voice was hoarse from coughing and more than once she'd coughed until she vomited. He was right. I cancelled her sessions for the rest of the week. Johnny propped her up on her boppy in front of Sesame Street and finally, she slept.



And slept.



On Thursday she was perkier. I pronounced Bee well enough to go to school and Teeny still unable to do her therapies but well enough to attend Bee's classroom's holiday event. I had a meeting I couldn't reschedule, so I had to miss it, but I think they had a lot of fun.






 

By Friday, it was my turn to be sick. And once the symptoms hit me full-force, I felt terribly guilty for pushing my baby to perform. This cold was a bad one, and Teeny definitely had it worse than Bee or me. But sick or otherwise, I'm still smiling today. Thanksgiving, usually my favorite holiday, was marred by the news of the diagnosis, and I was sullen and resentful and not in the least big thankful. Now it's settled in somewhat and while I'd still trade it away in a heartbeat, I am getting better at taking things one day at a time, preparing for the worst but hoping for the best. And all the while, knowing that Teeny's running this whole thing. The developmental pediatrician said that determination is a cognitive skill. So if that's true, then really, she's got a lot going for her. I think about this over and over. It's the one thing that every single therapist, doctor, counselor, nurse, friend and family member says about Teeny. She doesn't give up. She tries so hard. She's really so motivated.

So I am taking my cues from my daughter. Remembering that makes all that we're doing worth it, and there is still so much to be done. In the past two weeks we've found a speech therapist who will come to us at hours that work for Teeny's schedule, so even though the speech hasn't even been approved by Early Intervention yet, we'll be ready to go when it is. Now we're on the lookout for Special Instructors. Recently, Teeny and I have gone gluten-free to see if this helps her in any way. I've packaged up still more copies of the MRI images and now the ultrasound images from my pregnancy as well, to have them looked at by the many experts helping us. The pile of books and articles by the bed is growing and our savings is dwindling. My spreadsheet has more tabs. We made more appointments: next we're seeing a physiatrist and a geneticist. We rearranged our holiday travel so she would miss fewer therapy sessions, and our family understood. And every day we brush, we swing, we open our door to one therapist after another. It doesn't slow down. But we do it. Wouldn't you?





So as we wrap up this terrible, awful, no good year, we're feeling cautiously optimistic. And after so much sadness, Teeny, Bee, Johnny and I are ready for Christmas tomorrow. Despite all we endured in the past few months, we enjoyed Hanukkah and have been busy since, trimming our tree, listening to Christmas music on the radio, wrapping gifts, sending cards, wearing fuzzy socks, and shopping for (gluten free, vegan, organic) ingredients for sugar cookies and other holiday goodies. We're thankful to all of our wonderful friends and family who have been there for us even when we weren't up to talking. We love you and we wish you a wonderful 2013.

Walking in My Shoes: What it's Like Finding Out You're A Special Needs Parent

Dealing with this cerebellar hypoplasia stuff is a full-time job. A few weeks ago, I had to tell my boss at work that I would need some flexibility with my schedule because the amount of evaluations, appointments, consults, phone calls, emails, etc., that have to happen and can only happen during business hours. It's just mind-boggling and cuts into my work. And my boss, flexible and trusting, said he left it to me to manage my own schedule. But three weeks later, I have a new boss. When I was ten minutes late to my first meeting with him because Teeny’s OT was running late for our 8 am session that morning, I had to have the same conversation with him. He was so immediately understanding that I promptly resolved to work twice as hard. This means I am up late most nights catching up, which makes me tired, which makes me emotionally iffy for the next day, which makes me not a lot of fun to be around.

I am all business these days; I don’t have time to mess around. I am spreadsheets. I am to-do lists. I am folders full of neurological studies and nagging emails to neurologists, radiologists, nutritionists, therapists, and a pediatric neurosurgeon. I suddenly know lots of experts and they are all willing to help but so far they all say the same things. Yet still, I call, I fax, I email, I ship. I’ve sent copies of her MRI scans to two doctors I don’t even know, who agreed to review them, probably because I wore them down. I pore over articles and studies I barely understand. And I delegate all the stuff I now no longer have time for to my loving, patient, forgiving husband. He does the food shopping, goes dutifully to the post office, gets the car serviced, handles the playdates and the therapy sessions when I can't be there. I taught him how to use Google Drive on his phone so I can update his to-do list from work and see when he has logged in to look at it. If that's not Type A, I don't know what is.

Two weeks ago, I was making one phone call after the next in the Quest for the Elusive Medicaid Waiver. A Medicaid waiver provides Medicaid benefits to someone who does not meet the income requirements but needs it because they have some kind of overriding issue, such as a developmental disability. A friend told me Teeny would need that, especially as she aged out of Early Intervention, because the DOE, which takes over after EI, covers less and insurance doesn't always pitch in to help. Also, I learned that it can take up to a year from the time you're put on a waiting list to actually receive the benefit. So I basically didn't put the phone down until I had Teeny added to the waiting list of the only agency in town that helps kids under 3, but at that point we weren’t there yet and I was making a dozen calls a day just to find help with this one thing. One was answered by a very kind woman who told me there was a resource fair being held later that week. She told me that every agency servicing Manhattan would be there, and if I went, I’d get to meet a lot of the people I'd been calling face-to-face and maybe get some answers. So I rearranged my schedule and on that Thursday, made my way to midtown to the fair.

To call it a “fair” is a stretch. The address led me to a church on West 59th Street, a big beautiful building with colorful balloons strung all around the basement entrance in a sad attempt to appear festive. I heard women’s voices as soon as I walked through the door and was instantly reminded of the many rummage sales and other events I attended as a Brownie scout in church basements all over Jackson Heights. The room smelled like old people and instant coffee. There were ladies in house dresses serving danishes to a long line of people I suspected had shown up just for the free food. Volunteers were handing out name tags and freebie bags full of Tootsie Rolls, plastic pens and handouts no one would read. Many of the people sitting at the tables were clearly patients or clients themselves. It was a sad, sad place to be and I alternated feeling sorry for the people I saw there and for myself for being there.

And yet I wandered around, looking from table to table for a face, a name, an agency that could help. I spoke to a few people who were helpful, but no one there could makeTeeny’s problem go away. I chatted with a few sweet people. Others handed me flyers, brochures, refrigerator magnets, pens, a water bottle. Many asked about the particular “special need” I was dealing with. No one knew what to say. A few people asked me whether I was a parent, a caregiver or a professional, and when I said I was a parent, every single one caught their breath in the same way and said “Oh. I’m so sorry.” At one table, a man handed me a complimentary copy of Special Parent magazine and I had to restrain myself from throwing it back in his face. Instead I burst into tears.

I am not a Special Parent. And so far, Teeny is resisting being a "special needs" kid. I hate that word, special.

At the fair that was completely unfair, I sat in on a workshop that I thought would be helpful. A week before, I’d had no idea what benefits Teeny might be entitled to, so I gravitated towards the discussions about available resources. I sat down in a room filling with people who identified themselves, some in very poor English, as parents and caregivers of people with disabilities far more severe than Teeny’s. I thought it would be a coaching lesson on how to advocate for your kid, on what's out there and how to get it. I was wrong. As I listened, I suddenly felt very white and very overprivileged. The panelists went through the applications for Medicaid, SSI, SSD and other federal benefits very slowly and patiently. They spent the better part of an hour explaining again and again that once you get SSD you often lose Medicaid because suddenly you earn too much. Because I work with and for financially underserved residents of New York City, I know that the income requirement for Medicaid is $15,000 for a family of four. Once your family of four brings home more than $15,000, you are making too much. In Manhattan. I felt a wave of sadness and compassion for the people sitting around me. It’s hard enough to deal with what we’re going through now with the limited resources we have. I feel sorry for myself sometimes that I don't make as much as my peers because I work in non-profit or that we have to make a choice between this or that because we have only one income for the four of us. But these folks had no money, limited English skills and little education. I know that Teeny will get the services she needs because she has a mama who doesn’t give up. But I am able to be that way because of the many privileges I have. For someone still bitter about being dealt this crappy hand, I am very lucky. Relatively.

I was feeling worse and worse sitting there. So when I saw my phone light up with a call from a number I didn’t recognize, I stepped out of that workshop about welfare benefits where I felt overprivileged and undeserving, just in time to miss a call from the EIOD, that elusive granter of requests and approver of services. It was like missing a call from the President. In a full-on panic, I fled the fair in search of full bars. Out on the street three seconds later, I called her back and got no answer. I emailed. I called again. I called my service coordinator and asked her to let her know I was trying to reach her, and while I did, I heard a beep and a boop: my phone, telling me a voicemail from the EIOD had come through without even ringing. I couldn't believe it. I imagined her, a cranky government employee buried in paperwork, adding Teeny to her naughty list just because "mom" couldn't be bothered to pick up her phone. I was nauseated and my palms were sweating. I worked myself into a nervous frenzy and sat still, phone in hand, on the sidewalk near Columbus Circle, afraid to move or even breathe lest I lose my bars and miss her call again. She finally called back two hours later. To my surprise, she was actually human. She approved a speech evaluation and visits to the developmental pediatrician. A week and another only slightly less stressful voicemail exchange later, she also approved an increase in OT and PT, and 3 hours a week of respite care. When she gets the speech evaluation, I expect her to approve speech therapy and a monthly team meeting of all of Teeny's caregivers. I expect assistive technology to be covered to some extent as well. I am surprised that this is all coming so easy for us and then I remember her diagnosis. Call it cerebellar hypoplasia, call it a non-traumatic brain injury. Or use the official term, the one with the diagnostic code, Congenital Anomaly of the Brain. Whichever you choose, they are equally horrible. You don't question a diagnosis like that. It's serious stuff.

And yet Teeny is blossoming. She does not look or act like a brain-damaged kid. She is gorgeous. Her eyes are big, her head is round. She has baby fat. Her doctors do not believe this to be genetic or degenerative in any way. They are sticking to their theory of a prenatal injury of some kind, which they say is relatively good news. And clearly, there's something to this neuroplasticity thing. With all these approvals and increases in services, there is now a stream of people in and out of our apartment. She has some kind of therapy or appointment nearly every day and some days she has two or more. She’s got a team of ladies who adore her, bring her balls and toys and spoons, who get down on the floor and play with her, stretch her, brush her, swing her, clap for her and love on her so much that Bee can't help but be jealous. I try to be home for as many of the appointments as I can so either Johnny or I can distract her. Sometimes one of us takes her to the park. One time we made cupcakes for our PT. Another time, we made frosting. But most of the time, she is glued to their side, fully a part of the therapy session. She loves the therapists just as much as Teeny does and she loves their toys even more. She's learning to sign and she wants to be brushed and swung too, and the ladies are only too happy to indulge. She works her charm on them and has managed to score a new ball, a fairy costume, and exclusive rights to a plastic piggy bank that sings and lights up when you put big plastic coins in it. "I want to play with her pig!" she says every single time I tell her it's time for OT. Which is a lot. She's also earned a lot of special Bee-time from her mama and all the other relatives who see how Teeny's burgeoning social life is affecting her. For Bee, these therapy sessions are a painful exercise in sharing. But for Teeny, they are magic. You can see growth and change from one week to the next; it’s almost unbelievable how much progress she is making. From everyone from my parents to her therapists to neighbors to colleagues I hear the same thing again and again: "This is the same baby I saw two weeks ago? No! I can't believe it. She's grown so much already! She's really changed. Look at how much she can do now!" And I know that's not just lip service. I see it too. She can containerize her toys now, she can pull out and push in. She can reach for a magnet on the fridge, grab a baby puzzle piece by the handle and then replace it where it belongs. She can lie on her side, stretch up to a high kneel, and wiggle her butt to music when she’s held in a stand. She putters around the house now with a more advanced version of her bunny-hop and has learned to climb up chair legs, our legs, anything she can put her weight on. 

This week we had her speech evaluation, conducted by a classmate of mine from high school. I was impressed with her skills, her patience, her ability to determine what about Teeny’s chirps, gurgles and gestures was or was not actual communication. She said if Teeny was being evaluated solely on speech, she probably would not qualify for services because she wasn’t that delayed, but that she would make a recommendation nevertheless based on her medical diagnosis. I was thrilled. Cerebellar hypoplasia can mean significant intellectual disability. While this has not manifested itself in Teeny so far, I live in fear of it and am hypervigilant, always on the lookout for signs that she is or is not cognitively okay. Hearing this made me more confident. I told everyone I knew that day that Teeny Wasn't That Delayed, and added find a speech therapist who will come to Harlem to my list of things to do. By this point I'd already found two unicorns -- our PT and OT. What's one more? And now I see just how clearly Teeny is communicating. She nods her head yes and shakes her head no. She furrows her brow to express confusion and puckers her lips when we say "Kiss?" When we call "Teeny!" she looks quizzically at us. She waves hello and goodbye. She claps when we say "Yay!" She's going through a phase of biting me when she's nursing, and when I say "Ouch! No! Don't bite me, Teeny!" she bursts into tears in the most heartbreakingly adorable way. She signs more and food, and her first words were up and Da-da. (It doesn't matter that da-da is for Johnny... and for me.) She's 14 months old. Not That Delayed indeed.

Physically she’s changing too. She suddenly has more hair. She’s gaining weight. After a particularly difficult phase of feverish sleeplessness, Johnny stuck his finger in her mouth and ran it along her top gums. She shrank back in discomfort. Wouldn’t you know, that little toothless wonder is turning into a piranha. She’s getting six teeth at once! So clearly, her brain is getting stimulated in many ways.

In other news, Bee is almost three. She reminds us of this every day. "Mama, I'm almost three!" She's reading a little and writing her letters very well already. Her school is play based, which I like because it encourages art and creative, imaginative play. This is good because when she comes home she wants to practice her letters with me. Her fine motor skills are improving at lightning speed just like Teeny’s. Two or three weeks ago, her capital letters were big and shaky. They are getting stronger and straighter, and she can write them smaller now. She can write her name and while she writes the letters one on top of the next, you can clearly see that it says B E E. 

She can write both upper and lower case and loves to write them over and over on the Brain Quest wipe boards we got for her a month or so ago. “Mama!” she screams. “Can you erase the Qs? Erase them! I want to write Qs!” So impressive, but on the other hand, I just can't get the kid to sit on the potty. She’s very interested in it, but won’t use it yet. She looks at it, sticks stickers on it, asks questions about it, will occasionally sit on it fully clothed. “When I’m three I will go to the bathroom and wear underwear,” she tells us. She’s got exactly two months to go. In the meantime, she puts Minnie and Mickey on the potty together and announces that they’re sharing, or better, that they're peeing on each other. Mickey and Minnie are her favorites, and she reminds us daily that she wants to get on an airplane and go see them again at Disney. We've told her that we can go back as soon as Teeny walks, so no one has a more vested interest in Teeny learning to walk than her big, mouse-loving sister Bee.

Bee is also very musical. She comes home from school singing songs I didn’t teach her, which is an odd reminder to me that she has a life beyond what I share with her and teach her myself. She sings Jingle Bells under her breath as she lights our Hanukkah candles, sings the classroom’s goodbye song to all of her stuffed animals one at a time, does the hand gestures to the Itsy Bitsy Spider over and over. She taught me a new version of Open Shut Them and came home one day shrieking On Top Of Spaghetti at the top of her lungs. We had so much fun singing it together.


 
This week marks the first time in over twenty years that I have celebrated Hanukkah at home. Last year I got a menorah as a gift and this year we bought candles for it. Unwilling to recite the Hebrew blessing which I somehow still know by heart, I gather the girls in my lap and light the candles saying the serenity prayer instead. That's about as spiritual as I can get, and I feel peaceful, solemn and serene for all of twenty seconds until Bee shrieks, "Mama where's my present? I want my present!" I am enjoying the holiday tradition, but I'm glad there's only one more night to go.

Night time has been interesting. Teeny is going through a new phase of co-sleeping, which has a domino effect on the rest of us that results in musical beds. She falls asleep in her own crib every night but by midnight, or to be more specific, by exactly two seconds after I have closed my eyes, she’s up and refusing to be put back down until I, frustrated and exhausted, lay her down with me. Instantly, she’s out cold. That’s when Bee wakes up. Because she is now going through a phase in which she refuses to stay in her bed at night, Johnny knows he's going to end up with her so she doesn't wake me and the baby. More often than not, he doesn't even bother falling asleep in our bed because Teeny’s already in there with me. But because he is too tall to sleep with Bee in her tiny toddler bed and too tired to sit up next to her until she falls back asleep, they both end up in the living room: Johnny on the couch and Bee on the loveseat, and when I invariably wake up at 5 am needing to pee, I wake them up, and that noise then wakes Teeny up. It’s hardly ideal but it's such a comedy of errors that I can laugh about it once I've had my (decaf) coffee.

Lack of sleep is challenging for any parent. Before Teeny’s diagnosis, I was already a zombie. But now that I’ve taken on Warrior Mama as my second full-time job, I am really beat. This is not good. I know that I’m putting my health at risk by not getting enough sleep. But worse than that, it makes me bitchy. I am so tired some days that I’m not thinking straight. I react with my emotions instead of my head. I walk around on the verge of tears a lot of the time. Yet the rest of the time, I’m smiling and full of joy. I still have a great life and I know it. I have two beautiful girls. Teeny is determined, adorable, loving, happy. Bee is beautiful, brilliant, creative, mischievous, affectionate. Johnny and I have two delightful daughters and a married life that is full of love. But when I’m tired, my skin, not thick to begin with, feels like cheesecloth that cannot keep anything in. I am constantly wounded by minutiae, harboring ridiculous resentments and grudges against people for things they couldn’t possibly even be aware of. I list my gratitude every day and talk about them with Johnny every night, but sometimes I am tired of being grateful. Being a mama is hard, and being a fighter is harder. I'm tired. Sometimes I want to be taken care of too.

And just when I'm about to open my mouth to whine about how bad I have it, something tragic happens like it did today in Connecticut. As one friend wrote tonight on Facebook, there are parents out there with wrapped presents hidden in a closet that their children will never open. Parents dropped their kids at school this morning never suspecting they would never see them alive again. I can't even fathom it. I left work tonight needing to hug my girls before they went to bed. I came home to them washed, bathed, and waiting for Mama. We lit the candles, opened presents, sang, and snuggled. Bee said she loved me thiiiiis much, and threw her arms out wide. Teeny threw her little hypotonic arms around my neck. I kissed four chubby, rosy,warm cheeks. I held a living, breathing, growing babe in each arm, and I didn't want to let go.

And Now The Struggle Has A Name**

**(Hat tip to the Tragically Hip, some band I've never heard of, for having a song with that title. I found it on Google and didn't even bother listening to the song. I hope it's a good one and if it's not, don't tell me.)

It's amazing how accurate a mother's intuition can be. It's truly remarkable how I, generally crappy at reading people, picking up on clues and hints, oblivious to subtleties, have been right about every single thing so far when it comes to Teeny. I just know. And now I am getting used to writing blog entries that no mother ever wants to write. I am getting used to being able to trust my intuition about it all. But I'll level with you. I've been pretty smart all my life. I've been a doer, a fixer, a getter of As, recognition, promotion. My hard work always pays off. I see a problem, I solve it. There's always a way. So what am I supposed to do when a problem lands in my lap that I cannot fix?

A month ago we had Teeny's Big Scary Meeting with the representative from Early Intervention. The folks from our agency who were there with us called her the EIOD. I forget what that stands for, but basically she was a tiny woman buried under laptops and papers and lots of red tape, who looked doubtfully at our beautiful and happy daughter as we all took turns describing her issues. Teeny cooed at her as she tried happily to eat our service coordinator's pendant. The woman smiled at her from under her paperwork and offered us the bare minimum in services. We all stood up and cried out in protest. But no! What do you mean? Look at her. She can't crawl correctly. She falls when she's up on all fours. She can't sit up. She can't talk. Okay, okay, the woman agreed. Twice a week PT and twice a week OT. What about speech? I demanded. Too soon, she said without even looking up. I want to state for the record, I said, having no idea if there even was a record being recorded, that I think she will need speech. I don't want to wait until this contract is up to begin that process, so I want it documented now in case we need to revisit before the contract runs its course. She nodded, but offered nothing. We're seeing a neurologist, I added. Her ears perked up. Do you have any documentation? Not yet, I said. He requested an MRI but we haven't done it yet. Well, get me something from the neurologist and then we can talk, she said. She looked away, closed her laptop and started shuffling papers. And then the meeting was over. 

I felt almost exhilarated. I had advocated for my kid! By pushing back, I got her twice the services the EIOD offered initially. It felt like an exercise in negotiation. I was reminded, somewhat absurdly, of the negotiations we had to practice in my Organizational Behavior class over the summer, and interrupted myself by saying but this is her life we're talking about. Did I say that out loud? How could one push back make such a difference in a child's life? I will never know.

So I thought that was it, we were in and we would start the next day. But then the agency couldn't find anyone who was willing to go to Harlem. So they "contracted us out" to another agency, who basically did nothing but send us a magnetic calendar with their logo in the mail. No one called us. Then the hurricane happened and I had to grit my teeth and acknowledge with an admittedly forced feeling of compassion that no one was going to get back to me for at least another week while they dealt with the outfall. I watched my phone like a hawk, eyeing it for numbers I didn't recognize. Normally those are calls I avoid, but now I was grabbing my phone no matter where I was or what I was doing, and shouting "HellothisisAimee" breathlessly, fumbling not to hit the touch screen and accidentally mute myself as I tried to plug in a headset while I was walking to the subway or in the middle of a work meeting. An OT finally called me and offered us a 7 am slot. I asked for the opportunity to discuss with my Not A Morning Person husband, who agreed. But by the time I called the OT back 12 hours after we spoke for the first time, he had already had the case reassigned. Bastard. A few days later I got a call from a PT who barely spoke English. Now, I'm not a speak-English-or-go-home person by any stretch of the imagination. In fact I like to pretend that I speak a number of languages as fluently as I did when I was living and traveling all over Europe and acting like I was German or French or Icelandic, but the truth is, I can't anymore. I envy Europeans and Scandinavians in particular for being just naturally trilingual or more. But this guy had such a heavy accent of some kind or other that I was instantly furious at him and I hated him, absolutely certain that he would be of no help whatsoever to my kid if we couldn't understand him. I gave him a chance anyway and set an appointment for a few days later. Twenty minutes after the time he was supposed to arrive, my blood was boiling and Teeny couldn't hold out another second. She conked out for a nap and I was left to watch the phone. At which point he called to say he was on his way. I told him to forget it. Almost as soon as I hung up, the replacement OT called me - twelve days after the first one told me the case had been reassigned to her. I asked her where she had been. Well, she said, you know.. the hurricane. I couldn't get into the city. I asked her somewhat obnoxiously if her phone had stopped working. She said no. And I said goodbye. And wondered if I had just burned my last bridge. How the f**k I was going to pull a PT and an OT both willing to come to Harlem for my kid during times that worked for our crazy schedule out of thin air?

Luckily my high school connection saved me again. A friend and classmate of mine told me her stepmother was an OT and might be able to refer me to someone. With one email she put us in touch and with another, I suddenly had an OT and a PT who knew each other (and actually lived in the same building!) willing to come to our house. They both called me early last week and my poor service coordinator, helpless except to process endless paperwork to arrange things as I directed her to, filed the changes with the EIOD. Services should finally be starting tomorrow, Monday.

All of this kept me very busy, so busy that the date of the MRI that our neurologist asked us to schedule snuck up on me. It was last Tuesday, the 13th. By the week before, I was not sleeping. My stomach was upset, I was nauseated and afraid that I was getting sick like I had been earlier this year with my Mystery GI Illness that vanished just as suddenly as it appeared nine months prior. No. I was just stressed. When I relayed my symptoms to Johnny, talking to him through the bathroom door, I realized he was right there too. Nervous stomach. Anxiety. The jitters. Sleeplessness. This stuff is visceral when it comes to worrying about your children. It's not the same as the sweaty palms or tight chest you get when you're nervous about a job interview or a blind date. This is fear that's as primal as childbirth. It really hurts.

An MRI really sucks when you're a baby because you have to be sedated. And before that, you have to be fasted. So there you are, awake in the middle of the night and you want your mama's milk but you can't have it even though she's right there and you know she's got plenty. So you're cranky and hungry and thirsty and you don't sleep. And mama doesn't sleep so she's not as sweet and cuddly as you're used to and you just don't know what's going on. And then you have to go somewhere that smells funny and a bunch of people you don't know pick you up and poke you and prod you and stick things around your head and on your arms and on your fingers and toes and then in your veins and you are basically bundled up into a baby burrito and strapped down so you can't hurt yourself or anyone else and then your mama is asked to leave and she's crying and you're screaming and it's awful.

They told me she woke up and needed more pentobarbital twice.

And to add insult to injury, while your kid is in the scanner and you can't be there and you're in the waiting room of a children's hospital, truly the Saddest Place On Earth, with a bunch of moms whose kids are so sick, much sicker than you think your kid is, the ladies you want to kick because they call you "Mom" instead of "Aimee" come to you and tell you there's a problem with your insurance so you call them and you get an automated response and you're screaming "representative! representative!" and everyone is looking at you and they come on the phone only tell you you're out of network and would you like a list of covered hospitals and you're saying but she's in the scanner now and at the same time you're trying to calculate what a bill for an MRI could possibly look like and how you are going to pay that and then the nurses are calling you because she's awake and you hang up on the representative and go into recovery and there's your baby girl, all wired up with IVs and pulse oxes and all kinds of technology, and she barely recognizes you because she's high as a kite. The nurses are only too happy to hand her off to "Mom" and they forget to offer your husband a seat and so you're sitting and he's alternating crouching and leaning against the horrible hospital crib and you're shifting the weight of a groggy baby from one hip to another, and you turn off the garbage TV they turned on that you're watching but Teeny isn't. You send your husband off to get copies of the scans and you wait, one minute at a time, for them to tell you you can leave. You snap a zillion pictures to keep your hands busy, while the nurses give you funny looks, musing all the while to yourself about how cute it will be when this is over and you write a blog entry about this experience and how lucky you are that it was all for nothing. And all you can think about is getting away from the people who call you "Mom" and toward your next cup of coffee.

So you get your coffee and you go home believing the worst is behind you, updating Facebook with a picture of Teeny asleep on your chest and a caption saying "We survived!" After all, the neurologist suggested the MRI just to rule things out. You feel like you went through this terrible, awful, no-good exercise because you had to do it to prove that your kid is fine, that there's nothing serious going on. You realize you've missed some work and you cram the rest of your week full of meetings, before and after the follow-up to the neurologist that you tell yourself is just a formality.

It doesn't even occur to you that there could be more to this story until you are sitting, two days later, in the stuffy waiting room at Columbia University Medical Center's pediatric neurology department, waiting. And waiting. You hate being here because there are so many sick kids, and your kid is not like that. Yet some part of you knows this is not going to be just a kaffeeklatsch. You haven't slept, you are so stressed that you want to eat the whole house but your stomach is so sick that you can't eat a bite, you are breaking out like a teenager. You reach over and pluck a grey hair off your husband's head. He is seven years younger than you and has never had a grey hair before. The receptionist tells you that the doctor is just reviewing your case and will be with you soon. And you wait. And then you see him our of your peripheral vision, file in hand, and he doesn't meet your eyes. Suddenly you get it. You turn to your husband and ask, "What if this is really bad?" He swallows hard and looks away. You get up and busy yourself with a diaper change, and then your name is called.

And all at once, life would never be the same again.

Neurologists are not known for their way with clients and patients. This one is pretty nice though. Everyone told me he would scare us by making us do a battery of tests to cover his butt, that the tests would all be negative, that the neurologist would make us rule things out one at a time so that if he said she was fine, we wouldn't sue later if she ended up having some minor thing. And that in the end, she'd be fine and this would be just a scare. But this is not how it played out.

What happened instead is that he sat us down in the same exam room we met him in a month before and he fumbled his words. As soon as he did, I knew something bad was coming. He said he preferred to just show us the scans so we could see for ourselves. He pulled up one scan of Teeny's brain after the other on his monitor, and he pointed to a dark place deep in the center that wasn't supposed to be dark. He explained that for some reason, one that we would likely never know or understand, Teeny's cerebellum is not fully developed and her pons is too short. This explains all the delays she has with motor skills, because the cerebellum controls all of that. It could and probably does control a lot more too, according to new research, but we just don't know exactly what. He read off some very scary sounding language from a report he had from the neuroradiologist who looked at her images and told us the good news too: that her cerebrum and the rest of her brain looked fine. He told us that this was a non-traumatic injury, probably related to an infection or an inflammation at some point before or after her birth, and that we might want to consult with a geneticist if we chose, but that he was sure it was not genetic. He kept talking, pointing to grey matter and white matter and myelin and all kinds of words that made me think of ninth grade biology and I felt suddenly very small and very far away. I felt an odd indignant feeling, like he shouldn't be talking this way in front of Teeny, who bounced happily on my lap while these terrible words swirled around the hot and stuffy room. At the same time I almost felt bad for him for having to break this news to us. What a crap job it is, ruining people's lives like that. He picked her up and she smiled at him. He measured her head again. Small. I asked about her microcephaly, and if she would look deformed. He said, what, you mean like Zippy the Pinhead? I could not believe he actually said that. When I recovered, I said, yes that is exactly what I mean. I saw microcephaly on your original report and that's exactly what I thought of. He said no, she's beautiful, her head isn't that small. She's just small. No one will ever know.

What he didn't come right out and say was that everyone would know that our child has a brain injury that cannot be fixed. That cerebellar hypoplasia, her likely diagnosis, is one that will affect her for the rest of her life. He talked about the brain's plasticity, especially in very young children. He said that it's very encouraging that she's been responding so well to PT. That healthy parts of the brain will often compensate for parts that are damaged in some way. He wouldn't commit to a prognosis, saying it's really anyone's guess how she will do with more therapy. He did say we needed more services, and now. More PT, more OT and speech too. He agreed to write a letter to the EIOD for us to try to get the contract amended now. He told us to come back in another three months or so. I couldn't think of anything else to say, so we gathered our belongings, a copy of the report, and our girl, and we left. I didn't take any pictures that time.

I'm not sure when the tears started, or when I realized that I was not surprised. I knew there was something very wrong all along, and no one believed me, and here it was. I am not sure when I went from being sick from nerves to being sick from finally knowing the truth. I only know that I was suddenly acutely aware that my life would never be the same. It was cold and grey outside, bleak and raining. We had no umbrella, I was late for a meeting at work that seemed important when I booked it, but we needed to walk. We needed to talk. I needed to cry and hug my baby. I had her bundled up in the Angel Pack on my chest. She fell asleep and my heart grew fiercely protective of her, of our family. And I heard myself say something I never thought I would. I stopped dead in my tracks on some decrepit sidewalk on Amsterdam Avenue in Washington Heights and grabbed Johnny's arm and I begged him not to leave me ever. I told him that this was going to be very hard for all of us for a very long time and that I know marriages have ended over less serious things. He is my love, my life partner, my best friend. I could not do this without him. We would need each other through this and Freyja would need us both. He hugged me and made me promise too. And I cried. I cried because this was not what I signed up for when I told Johnny two years ago almost to the day that I wanted another baby. I cried because I was ashamed that I actually thought, stupidly, to myself what if she never goes to Harvard? I cried because I was crying, if that makes any sense. I wanted two girls close in age who would be in similar stages of development at the same times, who would be the best of friends and the worst of enemies but always as thick as thieves. I thought of Bee, only two and still such a baby emotionally but precocious in every other way. She's learning to read and write as she's learning to sit on the potty. And now we don't know if Teeny will ever do any of that. Bee - my mini-me - loves her sister so much. I never had a sister growing up but always wanted one. What is it like for a gifted child to have a special-needs sibling? What is it like for parents to have two children with such disparate needs? Whatever is in store for this family, it wasn't what I planned.

I know I'm not in control here. I know there's nothing I can do about this but a lot of footwork: research, phone calls, appointments. I have to practice doing the things I hate most - calling people I don't know and asking for help, asking questions I don't want to be asking. I have to worry about how we are going to afford all this. I have to practice telling people. Someone close to me asked me not to blog about this. I understand why. This is big and personal. Family business. But it's our reality. We don't know what having a diagnosis of CH is going to mean for Teeny. I have to tell people, because as one person I told put it, knowledge is power. I tell people and they know people who have access to resources, people who have special needs kids, people who can help. Three days in and I'm already on a Yahoo group and a Facebook group. I have a dozen schools and research facilities to look into. I have seen videos of CH kids walking, running, swimming. They move like Teeny does - weakly and with little coordination, but with a sweet determination that cheered me. Most importantly, they move. I have already seen CH kids who have grown into adults post in the Facebook group assuring parents of newly-diagnosed CH babies that they have a chance, that they themselves have graduated from college, can read and write and run and dance. On the other hand I have also read about the high rate of autism amongst CH kids, and how many of them are non-verbal. They have poor eyesight and often have poor hearing. Some walk with walkers. Others never walk or even sit. Time will tell what this means for Teeny, but right now I already know that our lives are different. I blog about my life and my kids. How could I not write about this?

I'm turning 40 soon, and I've had a lot of bad things happen in my life. This is without question the worst of the worst. And yet I am handling it better than I have handled many things, and it's because of you all. If you're still reading, it means you care. I have support now. I have the family I always wanted, I have a job I love passionately. I have friends and extended family who reach out and continue to even when I'm overwhelmed with life and don't get back to them. You aren't keeping track of who called whom last. You know I need support even if I don't want to talk about it, so you reach out. The people I have shared this with personally have cried with me, they have hugged me, they have expressed their unconditional love for us. Some of them are doctors, and have offered to review the records and offer their expert opinions. Others are moms who have been in my shoes in some way or other, feeling the fear I am feeling right now. And still others are just people who love us and are sad that this is happening. But they have all said the same things. I am so sorry. What sad news. I am here for you. What can I do to help?

Here's what you can do: you can be my friend. You should know that right now I probably hate you a little bit, especially if you have a child with a fully developed cerebellum. So basically that covers nearly everyone I know. The rest of you I hate for being childless and not having any idea what it feels like to have to be selfless and put another human being's needs first, and to be so scared of what that means. I don't really hate you, you know. I'm just feeling a touch of the Why Mes and Why Not Somebody Elses. I'll get over it eventually, but I will get over it faster if you ignore that I feel that way and just act like my friend. Take me to coffee. Come with me to get a manicure (I desperately need one) or a massage or let's go for a run - make me find the time. Offer to babysit and know that we probably won't take you up on it. Offer to come hang out with us. You can bring takeout or a six pack and we can watch movies and chat while the girls are asleep. And please: Pick up my kid when you see her. Hug her and treat her like you did a week ago, or a month ago, before you knew. She's the same happy and loving little girl that she was on Wednesday, before we knew that this thing had a name.

I don't want you to act like she's contagious. Now more than ever she needs people in her life who make her smile, who encourage her to move and to engage, to push buttons with her, to ask her to poke at your nose and point to bright lights, cats, and Daddy. 

Forgive me for saying this, but I don't want to hear anymore about your sister's cousin's friend's kid who didn't walk until three but is now an Olympic gymnast. Those stories were encouraging a few months ago but not now. However, if you are parenting a fragile child, a special needs child, a child whose health and/or well-being is somehow compromised, if your life was forever altered by a doctor's diagnosis, no matter how similar or different, I do want to hear from you. I want to learn from you. I want to know how you became resilient and how you take care of yourself. I want to know what you had to do; how you battled the insurance companies, the state, the many agencies; whom you know; and little things like how you had to behave, what you had to wear and if people took you more seriously or gave you more financial aid if you covered your tattoos. You think I am kidding. I'm not.

I don't want you to tell me you admire me, that you don't know how I do it. I've been mama to a special needs kid for three days now and already I seethe inside when I hear that. You do what you have to do for your kid, right? It's not like I have a choice. I know this comes from a good place, but I'm not in a good place with this yet so I can't hear it.

I don't want you to tell me that she's an angel or that God only gives us as much as we can handle. Give me a break.

And if you are a health care professional, please do not call me Mom. I am not your mom. I am a person and if you don't know my name or have two minutes to look it up on Teeny's chart, please just ask me. If you don't, I will simply ask you to please call me Aimee.

What is cerebellar hypoplasia after all but two words -- two words that don't define me or my daughter. I am not "Mom." I am Aimee, and this is one thing about my story. One thing of many. And she is Teeny, and this is only a part of her story too. She is a fighter. And she's ours.