A Birthday Letter to Teeny

To my second daughter, on your second birthday:

For weeks now I've been packing up the baby clothes that don't fit you, the black and white infant toys you no longer bother with. Your first haircut is behind you. You're all but weaned.  You are tall and slim. Your second birthday is tomorrow and you are now a little girl.

Two years ago tomorrow, your arrival completed our family. I had always wanted two daughters, so I waited for you with excited anticipation. But you didn't want to wait! You were born, a week before your due date, at home surrounded by people who love you. There were no wires, no lights, no machines. Just you and me, in the water in the dim light, with your daddy next to us and your sister Bee sound asleep. Our midwife and her assistant gave us lots of space and made it as beautiful an experience as possible. And beautiful it was, because you were beautiful.

It is hard to live in the shadow of a big sister, but you don't let that slow you down a bit. You are your own person with your own wants and needs. You are a sweet and gentle child and you give the best hugs I've ever gotten. You love music, you love to dance and bounce and play. You are alternately easygoing and extremely opinionated. You are a toddler in almost every way: you are busy with pretend play; you like textures like sand and water and rough surfaces; when I drop you at school, you usually wave me away, more interested in the light table or painting at school than saying goodbye to Mama. And of course, while 95% of the time you are happy and mild mannered, you can also throw a terrible-twos tantrum with the best of 'em.

Your words are coming; this morning in the car on the way to school, you said "bus" without any prompting from anyone. I looked up to see a yellow school bus blocking traffic. You were smiling at me, pointing at it from your seat. I can no longer count the words you understand and use actively; every day there are more. Your mobility is also coming. You cruised the length of the sandbox in your bare feet two weeks ago; this weekend you cruised the length of a NYC park bench and back with your braces on. You are getting bigger and stronger. Your determination, which I first spotted as a flicker in your eyes when you were ten months old beginning physical therapy, burns brighter and brighter all the time.

When you were born, no one had any idea that your life would be so very different from the way you entered the world. No one had any inkling that shortly after your first birthday you would have a team of therapists and doctors and specialists working with you. But they are helping you, and while you may need their assistance throughout your life, you are the one who deserves the credit for the progress you make. You have unwavering courage; you are bold, you are brave, you are persistent. I admire you and learn from you.

In his book The Art Of Racing In The Rain, which I hope someday you will read, Garth Stein wrote, “In racing, they say that your car goes where your eyes go. The driver who cannot tear his eyes away from the wall as he spins out of control will meet that wall; the driver who looks down the track as he feels his tires break free will regain control of his vehicle.” A year ago, I had my eyes fixed on the wall. Unable to undo the issues you were born with, I felt helpless and lost inside. But you changed all of that. You helped me get my eyes back on the road.

In the past year of doctor appointments, therapies, treatments, evaluations, meetings and explanations, I have learned to watch you and to listen to you. You show me that you are progressing. You show me that you are learning. And most of all, you show me every single day that you are happy right now. Yes, life is frustrating for you. That's okay; it's frustrating for everyone. It doesn't matter to you that you're not running marathons or writing novels. You can move from point A to point B. You can express yourself and get all your needs met. You don't let this thing discourage you, and you don't let it discourage me. In this way you have accomplished in two short years more than most people ever could. You have helped me love you for who you are, and you taught me that who you are is are everything I ever hoped for in a daughter. I am so lucky to have you in my life, my sweet, beautiful, determined girl. I love getting to know you. Happy second birthday to you. I love you to the moon!

Mama

 

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.

Life Goes On

Almost two weeks have passed since we got the diagnosis. The range of feelings both Johnny and I experienced was a little like cramming all of puberty and adolescence into ten or eleven days. I can't speak for my husband, but as for me, I won't lie to you. The way I felt last week was second only to me at fourteen, miserable, suicidal, lying on the floor of my room in the dark, blaring Pink Floyd's The Wall or the Cure's Pornography, easily two of the most gut- and heart-wrenchingly, agonizingly hopeless records ever written, absolutely certain that the best thing I could do for myself and for the rest of humanity was to end my life. This is the stuff of Sylvia Plath. It's stuff I really never wanted to experience again.

Years ago, I was in a group therapy for a short period of time. We were learning Dialectical Behavior Therapy, or DBT. In one exercise, we were asked to describe the pain we lived with. For me, the word I settled on after much deliberation, was anguish. It still moves me to tears when I think back on that very sad and dark part of my life. I was so unhappy for so long. Anguish is painful, bleak, full of shame and misery and hopelessness. It's rough. I was really hurting.

Those of you who knew me then know that I can really do miserable. Back then it was somewhat comforting, like an old security blanket. But you know, I had no good reason for being so unhappy. I had a home, I had school, a job. Family, friends. Resources, opportunities. I wanted for nothing. I just hated everything. Sadly, the security blanket of miserable gave me a sense of belonging, if you can believe that. It was my identity for far too long. But I've long since shaken that off and developed a more productive sense of purpose and a true love of life. Now, at 39 and with a perfectly good reason to be unhappy, it feels self-indulgent. I'm not going to tell you what Johnny and I talked about. I'm not going to repeat the questions I asked, the what-ifs, the fears I spoke aloud. These are things I never wanted to say and never will say again. This is not radical acceptance. I don't want this and I'm pissed as hell that it landed on us. I am furious that Teeny's life will be affected. I am not done grieving the loss of the parenthood I wanted, and the family I expected. But I am not wasting any more time with what-ifs. As someone I loved many years ago once wrote to me, "That's not my program anymore."  After a few days of tears, wallowing in self-pity, and the kinds of conversations parents should never have to have about their children, after a Thanksgiving in which I felt really un-fucking-thankful for this crappy hand we were just dealt, I realized that I was dwelling on stuff that might or might never happen, and I was forgetting the kid in front of me, who was here now, and needed me now. I realized that I needed to focus not so much on the things Teeny may never do but rather the things she's already doing. My heart swelled again with love for this beautiful girl who is a lot more than just a diagnosis, and I remembered my favorite quote, by George Bernard Shaw, that I saw for the first time pinned to the wall in a classroom in the school I used to teach at: 

"This is the true joy in life, being used for a purpose recognized by yourself as a mighty one. Being a force of Nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. I am of the opinion that my life belongs to the whole community and as long as I live it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die. For the harder I work the more I live. I rejoice in life for its own sake. Life is no brief candle to me. It's a sort of splendid torch which I've got to hold up for the moment and I want to make it burn as brightly as possible before handing on to future generations."

This is the way I live, and it's the way I love. Remembering this, I emerged de profundis, anew. Here's why:

Teeny is there. She's present. That MRI report is terrifying, horrible, scary. But this little girl has shown me a thousand times in the past week alone that she is going to do her best to beat this thing.

What I've learned is that nobody really knows what's going to happen to Teeny. The neurologist would not commit to a prognosis regarding her cognitive abilities. Basically he and my radiologist friend agreed that her success will be largely dependent on her environment - her therapy and her family -- and her own sense of determination. The neurologist told us not to come back for at least three months because there was nothing more he could do until he got a sense of how well she was responding to her services.

So I wanted to make sure she had access to every single service that might help. I did a bunch of research right away. I ordered books like What To Do For Your Brain Injured Child and The Woman Who Changed Her Brain and some others. I found a place in PA that offers week-long seminars for parents of brain injured children that we can't afford to attend. I've been in touch with a neurologist whose lab does extensive research on the cerebellum. I've printed out every scientific article and study I can find on cerebellar function and dysfunction -- and read some of them. I scrutinized Teeny's MRI report and looked up every word I didn't understand. I felt like I was taking a crash course in neurology as there were more words in the report that I didn't understand than words I did, but now I can read it fairly fluently and even I found a mistake in it that up until this point no one had caught! (Now I'm working with the neurologist to have it corrected.) I'm reading as much as I can about neuroplasticity and have learned that even the cerebellum can benefit from it. I'm reading about various therapies that claim to be able to heal brain injuries. I keep reminding myself about the study I read in which rats were given a lot of stimulation in their environment - toys, mazes, light, etc., and the control rats got no stimulation at all. When they were euthanized their brains were weighed and the stimulated rats' brains weighed significantly more than the control rats' brains. People are coming out of the woodwork to share their miraculous neuroplasticity stories. In the introduction of The Woman Who Changed Her Brain, I read about the single thing that people who overcame brain injuries and deficiencies had in common.  "Our shared determination... was actually a shared strength in frontal lobe functioning, that part of the brain critical for planning and seeking solutions. A hallmark of good functioing in this region of the brain is driven determination in pursuit of a goal." Determination is one thing that Johnny and I both have in spades, and it seems that while Teeny may have gotten the shaft the day they were handing out cerebellums (cerebella?), she was definitely at the head of the line to get her frontal lobe, whatever that is!

I scrolled farther and farther down in the online support groups I found, reading back over months of posts. I read questions, answers and comments by parents of kids with CH who have varying degrees of recovery. It seems that cerebellar hypoplasia is often accompanied by a whole range of other issues. Fortunately, Teeny appears to have none of them (yet). Among the diagnosed, some never walk or talk. Some can't feed themselves and must wear backpacks to hold (and hide) their feeding tubes. Some have had major eye surgery as babies. Many are autistic. Yet others have learned to walk and talk, have graduated high school and college, have jobs and learned to drive. There's one fellow in particular on there who has cerebellar agenesis (i.e., he was born with no cerebellum whatsoever) who has achieved all of those things. He's incredible, as are the other adults and young adults who post in this group. Their grammar and spelling: perfect. Their awareness of their challenges: dead on. I pored over pictures and videos posted to the group. Do the kids look sick? Can you tell? I got the names of institutes, schools, doctors, therapies, etc., that have helped other CH children. And I created a spreadsheet on my Google drive with all this information and more, and I go through it a little at a time.

Of course I'm getting her checked out for everything I can think of that can accompany CH - she's got appointments coming up with a geneticist and a pediatric ophthalmologist. We are waiting for clearance to see EI's developmental pediatrician. I submitted a request for a speech evaluation, for nutrition services. And so on. You should see my spreadsheet. It's a work of art.

The hardest part so far is what I'm working on now: getting her a Medicaid waiver. Apparently even though we make too much money to qualify for Medicaid, certain disabilities entitle people to it anyway, and once they get it, it covers medical equipment, home modifications, some schooling and programming, additional health care not covered by private insurance, even respite care. But every agency I've come across has a very long waiting list. But we're on them now, and I haven't given up yet.

And life goes on. Bee is having trouble sleeping through the night, which means no one in our house sleeps through the night. Johnny and I have been taking turns sleeping on the floor next to her, which really stinks. Our finances are tighter than ever so we're looking at a pretty bleak holiday season. One of our cats is sick and we can't figure out what's going on. My in-laws experienced significant damage to their home in Hurricane Sandy and we can't help them. Work is very hectic as I prepare to execute a strategic plan that will take my team in a radically different direction. I can barely find the time to get to my own PT appointments, set up through no-fault insurance to ease the neck and shoulder pain I've had since our car accident this summer. Of course as soon as I made it to my first appointment and relaxed into the heating pads nearly four months after the accident, the insurance not-so-kindly set up a series of appointments for me with their own orthopedist, probably thinking they smelled a rat. No rat here -- just someone who took three months to get to an appointment because of all the other crap that's going on. And oh yeah-- I'm still in school. Life is big. Really big. And Starbucks poisoned me again today with a full caf venti Americano instead of decaf, so while I'm grateful that it gave me the energy to stay up and write this entire entry in one sitting, tomorrow is going to be a tough day.

In the meantime, we've had a number of breakthrough moments. Here's a good one. In the last few days, I've taught myself a handful of signs. I read that this could help Teeny communicate, since passive and active speech could be separate and distinct challenges for her. But I felt silly, signing "Mama" and "Daddy" over and over with my thumb on my face and my four fingers extended like a turkey. Harder was the sign for sister - could I really expect her to copy that? I was doubtful as I signed "diaper" and "milk". But then this weekend over dinner, when I said and signed "more" and every time I did, I offered her another bite of tofu or brown rice pasta. Suddenly she brought her hands together. She watched me intently, and copied what I did. She had trouble pointing her fingers together instead of bringing her palms together in a clap, but she got it. And although she can feed herself perfectly well, she opened her mouth and waited for more. Success! I felt not unlike Anne Sullivan, Helen Keller's teacher, when she finally made her understand that the fingering into one palm and the cool sensation she felt in the other meant water. And I wasted no time in stuffing more pieces of tofu in that little open mouth. She's the healthiest eater in the family now. Too young to be picky, she'll try anything, and I take full advantage and feed her lots of "brain foods," lots of omega 3s, proteins, vitamin Bs, antioxidants. And I nurse her as much as I can. Because I'm at work during the day, this means I nurse all night. She wakes up 3 or more times at night, wanting milk. Most nights I end up bringing her into bed with me because after the third or fourth time I'm too tired to sit in the glider with her. But she is finally building tone in her arms so she hugs and clings to me now, and cuddles when we co-sleep. I know my breast milk is exactly what she needs to get proper nutrition, and I can't help but think that these opportunities for quiet mama snuggle time are helpful for her development too.

She started PT and OT last week. After the second PT session, the therapist said "Oh yeah. She's gonna walk."



In the first OT session, that therapist told me to look into Special Instruction for her. My heart sank, but I added it to the spreadsheet. Then after the second session, she changed her mind and said she probably wouldn't qualify for it. (We're collecting documentation for it anyway.) "I think she's okay cognitively," she said. "And," she added, "she's really very cute, too." She brings toys with her, and all kinds of tools and practical suggestions to make things easier for us at home.

In the past week, Teeny has gotten two teeth and seems to be getting another still. Both Johnny and my mother insist she's gotten much heavier. Always very underweight and small for her age, at 14 months old she wears size 12 -18 months in some clothes, 18 - 24 in others. She's sitting by herself and is working up to a high kneel. Yesterday the OT talked about us setting up a place for her to pull herself up to a stand safely, believing fully that it's right around the corner. She's curious and exploratory. She putters around the apartment and we find her, much as we did her sister when she was eight or nine months old, in the cat food, under the dining room table, rooting around in a basket of toys, pulling herself up by holding onto a chair or onto my leg. She made her way into the kitchen last night when I was cooking dinner and discovered Bee's animal magnets on the fridge. I have a whole series of adorable pictures of that and of her pulling out every single tissue in an entire box, but alas I have no storage left for pictures on this blog!

She now loves the iPad and fights Bee for it. She points at Grover in the The Monster at the End of This Book app, and screeches with delight at the many toddler apps that Bee played with and has since outgrown. Best of all, she now copies her sister. Obsessed with learning to write, Bee makes "shopping lists" every day. Teeny made one too:

And she is trying her darndest to talk. Her first and clearest word is "up." She also definitely says "da-da" -- meaningfully now -- referring to both Johnny and me. And she says, more or less clearly, "cat."

I reconnected with an old, old friend recently. Her son has special needs as well, and I sat down with her to talk about her experiences and to learn more about how the system works in New York. We talked for two and a half hours. As we put our coats on and headed out into the first really cold day of the year, she stopped me. "What are you and Johnny doing to take care of yourselves?" I had to think about that. Johnny was home now, I said, playing Zelda on his WiiU. He needed a break this afternoon so I brought the girls to my mom's. "But what about you?" she asked again. I didn't have a great answer.

But that's not the end of that story. I don't want to talk about it at work. To be clear, I don't mind talking about it with my coworkers, but when I'm at work, I want to focus on work. So I get to escape to my beloved job most days and not talk about cerebellar hypoplasia at all with anyone. I need that. One of my BFFs took me out for a mani-pedi today. I loved the hour of pampering, just sitting next to her and catching up like normal people. One colleague offered to have our apartment cleaned, and another sent me a gift certificate for a pedicure. Relatives who live eight hours away made time in their holiday schedule to visit and love on the girls. On Sunday morning I went for the first run I've gone on in two weeks, cheered on my my new virtual running pal. Yesterday I went to sleep at 8 pm. My mom has come through numerous times to give us badly needed breaks, or to be on Bee duty while we take Teeny to yet another scary appointment. Johnny gives me impromptu massages and takes great pains to keep the house clean. Tonight he cooked dinner while I put Teeny to bed. Friends, family and colleagues have reached out to offer to help in whatever ways they can, and to let me know they read the blog and that they care. Some of you I haven't even had a chance to get back to, but I will. I am very fortunate to have the people in my life that I do. Seriously, people. I love you. You know who you are.

Suddenly it feels like we have two kids in the house again. Two active, bright and healthy kids, and two bright-eyed and involved parents. This is the way it was supposed to be. So what if we have a long road ahead. It's not, as Johnny and I like to joke, all puppies and rainbows. Nothing's easy in life, and Johnny and I both have overcome huge obstacles to be the parents -- hell, to be the people -- we are today, so we know this first hand. I know there are no simple answers to Teeny's problems. In fact, for now there are no answers at all, and that's the hardest part. But even though we didn't sign up for this and we'd trade it away in a heartbeat, we're up for this challenge. We are determined. And clearly, so is she.

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.