Motherlode article!

Hey, y'all! My latest blog post is in the Motherlode blog of The New York Times!

FOR TEENY, WHO HAS PLENTY OF TIME

To my beautiful, courageous, determined Teeny on your third birthday:

This week I spent some time researching elementary schools for you. I know you are just starting at your current school, but you know I'm a planner and I like to do my homework. It was ultimately an exercise in futility, but a happy one. I realized I just couldn't know how much you will grow and where you will be in two years. You could be anywhere, doing anything! Today in the hallway at your school, someone I didn't know stopped me to tell me how smart you are. "You know," she began, while I wondered who she was and how she knew you, "she's bright and engaged and cognitively right where she's supposed to be," she said. "I can tell. She just needs a little help is all." I beamed. Because really, who doesn't need a little help? Reading about schools, I tried to imagine you at five or six. I pictured you in elementary school, learning to read. Doing math. Studying history. Making shoebox dioramas. Walking. Baking cookies with your sister and me. Whatever kids do. Someday, you will do all those things, and more. I know it.

Two years ago Daddy and I were just learning about your neurology. We were scared and sad and we just didn't know what it was all going to mean for you and for us. But you were unfazed. You did what no one thought you could do: everything. You rolled over. You sat up. You huffed and you puffed and you pulled yourself to a stand. You said Mama. Dada. Bee. And now, on your third birthday, you're in school. People ask you how old you are and you shout "three!" You count, you sing the ABCs. You like to do everything yourself. "I do it!" you say a thousand times a day. You climb all over everything, trying your best to walk. One day, you will. You speak in sentences and you always say please and thank you. You ask questions that start with what and why. You laugh with us, chiding "be nice!" when we run out of patience or get silly. You're constantly announcing "have to pee!" and every time, we all stop what we're doing and hurry you to the potty. Some of the time you don't even have to go. You just like to sit there with us and have us read potty books to you. You smile wide and hand me Time to Pee or Everyone Poops and I know I've been had. But you're having fun! Nowadays, your language expresses more than just wants and needs. We hear you interject "oh wow!" and "awww, silly Mama!" and "oh no!" into conversations and we know that you're listening and we know that you get it.

Daddy and I stayed up late last night, baking cookies and cupcakes for your school birthday party, talking about how magical you are. You are our guide, our teacher, our shining star. Your daddy always says that you might look like him but you have my determination. I am not sure that's true. Yes, I'm a hard worker and I have tenacity. Just like you. Yes, I get things done. Just like you. He may never tell you this, but your daddy is a tough cookie too. He is a survivor. He's been through more adversity than most people and he has somehow found the will to turn his challenges into opportunities. Opportunities to learn, to change, to live his life to the fullest. He keeps going and keeps growing.  Just like you. So it's in your blood; it's your nature to fight. But you have a spirit that is unique. You're a fighter, yes, but you don't flail. You just do. Sometimes your life is hard. Sometimes it's really, really hard. But this is the only life you know. You are just you -- and you love being you.

Today you are so in love with life. From the moment you wake up until the moment you conk out at night, your life is full and wondrous. Your eyes widen and you gasp with excitement a hundred times a day. You worship your big sister. You love cupcakes. The potty. Your My Little Pony collection. Queen Elsa. Singing and dancing. Books. Hugs and kisses and nibbles. Mama. The school bus, which you look forward to with an impatience I just don't understand. You love school, the park, the pool at the Y, taking baths, even pushing your wheelchair. You just started adaptive ballet and you can't get enough of your fancy tutu and ballet shoes. You are beloved by so many. Never in my life did I think we would have such a well-attended birthday party for a three-year-old. People came in hordes: your first teacher, your old school's director, your past therapists, your family, your friends, and a lot of people who just love you to pieces. No one could get enough of you and you loved being passed from one person to the next, soaking up the attention. You haven't even been at school for a month, and everyone knows your name. "Oh, you're Teeny's mom?" someone will exclaim without me even opening my mouth. "She's the cutest thing ever!" they will gush, and share some sweet anecdote about you pushing the elevator button every morning or getting people's names right by the third day of school or getting an ice pack after bumping your head and announcing that you're all better.  "She's already the mayor of the school," someone else pronounced, in the second week of September when you'd been there just over a week. People adore you. Simply put, you sparkle.

This week someone explained to me that there is a correlation between the cultivation of gratitude and the ability to problem solve. Apparently both concepts live in the same area of the brain. Until you came, I lived my life feeling very entitled and angry. I deserved this, I was owed that. I worked hard for things and felt robbed when I didn't get them. It never occurred to me that I might already have everything I needed and more. Right around the time that you came, I started to understand how fortunate I was. I am married to the love of my life! I am the mother of two incredible children! I have the best job in the world! I have so many wonderful people in my life! And slowly, the anger and resentment began to fade and it was replaced with a willingness to share my feelings, ask for help and embrace the abundance of love and support that began to come our way. And I realized there was a lot I could do to help get you what you needed, so as I have written about time and time again, I got busy.

Maybe I will always be sad that you were not given the same chance that your sister got. Maybe I will never understand why or how it happened. Maybe I will always be tired, maybe the list of calls to make, appointments to schedule, and bills to pay will never end. But I'm not sure any of that matters anymore. I am so proud to be your mama. I can't think of anywhere else I would rather be in the world than right beside you. I am so grateful for you -- you, exactly the way you are. And we have so much time. There is no rush. You will get there when you get there and you are living every moment in the fullest color. You are like Milo of The Phantom Tollbooth, my favorite character in my favorite book. His adventure began with a gift and a note: FOR MILO, WHO HAS PLENTY OF TIME. As he went on his quest to rescue the princesses of Sweet Rhyme and Pure Reason, everyone he met along the way said there was one very important thing about it that they couldn't tell him until he got back. When he finally returned safely, there was a huge celebration in all the land. The kings quietly reminded him of what they'd said at the very beginning.

"I remember," said Milo eagerly. "Tell me now."
"It was impossible," said the king, looking at the Mathemagician.
"Completely impossible," said the Mathemagician, looking at the king.
"Yes indeed," they repeated together; "but if we'd told you then, you might not have gone--and, as you've discovered, so many things are possible just as long as you don't know they're impossible."

So, happy third birthday to you, my beautiful daughter, my love, my light, my inspiration. May you have plenty of time. And may your life be full of possible.

I love you.
Mama

Silver Linings

It's mid-November. A few weeks ago, while the country was busy Halloweening and our city was remembering a terrible and devastating hurricane that blew through the area the year before, I was having trouble focusing. I didn't call my in-laws to see how they were feeling as they reflected on the past year of displacement and rebuilding a house with their bare hands. I forgot to buy pumpkins for carving and, worse, I completely spaced on the night our building did trick-or-treating and had nothing to give out. I kept getting home from work and falling asleep in my clothes as soon as the girls went down. I just wasn't all there.

It took a while for me to realize why. We were approaching our own anniversary.

In September of 2012, we finally convinced our pediatrician that Teeny needed to be evaluated. By mid-October we'd had four evaluations and very little concrete information. While we waited for Early Intervention to get going, we started Teeny in physical therapy. She was barely a year old and she wasn't crawling. She wasn't talking. She wasn't even sitting. Yet, everyone who saw her told us how cute she was and how sure they were that every baby goes at their own pace and some don't even crawl, and any day now she'll just get up and start walking, you'll see. She's fine!

But then someone said the word "neurologist" so two weeks later we had seen one and two days after that we were getting an MRI and then two days after that, everything stopped. And meanwhile the world around us was in shambles. My husband's family, living smack in the middle of the destruction of Hurricane Sandy, homeless. My normal routine at work, on hold so we could service the many pet-owning residents of affected areas. My friends, at best inconvenienced and at worst displaced for weeks or months. One close friend had to leave her flooded apartment as well as her job and the rest of her life to fly to St. Louis to live with her mother for six weeks, all with a newborn baby. Everyone was affected. And I was there for no one at all because I was too busy feeling sorry for myself and mourning the future I was supposed to have.

The weeks that followed are still a blur. Yes, I got busy with phone calls, appointments, research. I read books and neurology journals. I located experts, I wore people down. I'm a fixer; I got her the services she needed and more. But late at night, Johnny and I cried. We asked each other difficult questions and the answers were often just too hard to say out loud. But one night in December of last year, I said the most awful, terrible, no-good thing I've ever said in my whole life. I will tell you what it is because I want other people to glimpse into this window and see just a fraction of the pain we were experiencing.

I said: "If she were our cat, I would probably have her euthanized."

You can't just un-say something like that. I swallowed hard. Johnny just looked at me, his eyes big and his mouth silent. My cheeks got hot with shame. You were not supposed to say these kinds of things about your baby. These days I was sad all the time. I was very worried that the kind of depression I experienced in my teens would return. I was afraid of my feelings, scared of not being able to fix it, and truly terrified about maybe not loving my own baby.

I will be honest with you. Most of the time, I'm not very nice to myself. I waste a lot of time agonizing and beating myself up. It's crazy stuff. I sometimes agonize over things I've said or written for hours afterwards. I feel my face get red and and my stomach gets knotty and then, wishing I'd never said anything in the first place, I want to say a thousand opposite things right away, maybe to explain myself more fully or maybe to undo what can't be undone. Which of course starts the insanity in my head all over again, because no matter what I do I know it's too late and I'm furious that I opened my mouth again and when will I ever learn anyway? Crazy, I'm telling you. This is the tornado I found myself in as 2012 drew to a close.

But in the past year, the universe made a liar out of me.

First of all, animal person that I am, I somehow didn't know then that there are actually lots and lots of cats with cerebellar hypoplasia. If you Google the disorder, you will in fact find far more on the internet about kitties with CH than people. It turned out that I had friends with CH cats. I'd met them and pet them and totally loved on them like any other cat. A little wobbly, they lived pretty normal lives for the most part. So a cat with a new diagnosis of CH is definitely not a candidate for euthanasia. And neither was Teeny.

Within weeks, she sat. Shortly after that, she bunny-hopped and by January or February she was crawling for real. She showed us that she was learning. She grew stronger, more steady. With the help of our friends and family, we did a test that told us her issues were static, not progressive or degenerative. We began to have hope and clearly so did she. She learned to feed herself. She pulled herself to a stand and learned to crawl up stairs. She began to say a few words. She was doing so many great things that we got brave, thinking walking was right around the corner, and we applied for part-time mainstream preschool. Many nights I lay awake wondering what the hell we were thinking there. We had committed thousands of dollars and she might not even last a day. I had no idea what I was doing. I was deeply in my own head, involved in every mid-life crisis escapist fantasy, wondering how the hell this all happened and what the hell I was going to do. I spent the better part of the summer hurting; lonely and sad and feeling misunderstood by everyone I loved or thought I loved. I couldn't even tell the difference. I had created this busy life construct that looked on the outside like a bourgeois tower of success, but inside it I was a ball of nerves and confusion.

Then one night I lay in bed, awake in the dark, flipping through pictures of Teeny on my phone, and I realized that something magical had happened. I loved her. I didn't just love her because she was my baby and I had to. I didn't just love her because she was cute and blonde and had big blue eyes like her dad. I didn't love her despite her needs. I had fallen in love with the baby she already was. I couldn't even see the baby she was supposed to be anymore. I couldn't see the cerebellar hypoplasia, the cerebral palsy. I just saw Teeny. And I loved her with all my heart for who she was. And I thought about what I said almost a year before and felt my cheeks getting hot with shame again, but I swallowed hard again and as I did, this time I breathed out and I felt the shame leave me. Yes, I had said some awful things. But I had just been dealt a devastating blow that would change my life forever. At that moment, I barely knew my own name. A year later, Humpty Dumpty was back together.

The next morning I was up early with Bee, reading. Soon we heard baby noises through the monitor and I watched Johnny as he went into the girls' room. He came out with a smiling Teeny in his arms. He was nuzzling her belly and neck with kisses and she was howling with giggles. They were both glowing with love and I reached for her and she clung to my neck and murmured "Mama." She patted my back gently and I held her tight. Johnny scooped Bee up and came over to us. "Family sandwich!" he cried, and they piled on us. Bee jumped into my arms and suddenly I had both my girls close to my heart. As I held them as tight as I could, Johnny wrapped his arms around all three of us. We were a family.

Yes, Teeny had made so much incredible progress in that year. But truthfully, her mama made even more.

Well, she didn't start walking, but we sent her to school anyway. We worried for the entire nine months between paying the deposit and her first day, and by worry I mean we debated, argued, and talked about pulling her out before she ever went in. Her first day came. I hadn't slept the night before and I was so nervous that morning that I was actually sick. Yet within fifteen minutes, we knew she was in the right place. And in the two months since she started, she has become a different child. We sent a very delayed special needs baby to her first day of preschool and that same day we picked up an engaged, hard-working child.

She talks more and more every day. She repeats everything we say. The way her language is developing is wonky just like her wonky cerebellum. She has probably close to 100 words she can use appropriately but she just can't string two together. But she gets the sentiments: she will shake her head no and in a cranky and determined voice, say "bath." This means of course "I don't want to take a bath." She will wave wildly and say "mama," meaning "Hi Mama!"

Her words are not all nouns. She has verbs too like eat, and prepositions like in and on and "OUT!!", and even very age appropriate adjectives like colors, which really makes me proud. She makes the right noises for ducks, cows, dogs, sheep, chickens, and other animals. If you ask her if she wants to brush her teeth, she nods and heads for the bathroom. She waves hello and goodbye, knows how to clean her face, blow her nose, blow bubbles, put a pacifier in her baby's mouth. She knows all her body parts too and while she lags behind during Head, Shoulders, Knees, and Toes, she tries her best to keep up. When she sits in w-sit (her PT's worst nightmare), you can say "Teeny, fix your legs!" and she will pull them out from under her, one at a time, until she's sitting on her tush with her legs stuck out in front of her. "Leck," she says, and points at one leg, and then the other. "Leck."

She is VERY attached to her daddy. Where Bee is and always has been all about Mama, Mama, Mama, Teeny will notice every time Johnny leaves a room and call after him, but she can't say "come back."  "Daddy?" she will call instead, pointing at the door. "Daddeee. Dad-deeeee! Back!"  While she can't say her big sister's first name, she can sure say Bee, so she has taken to calling her that. "Bee! Bee! Bee!" She loves her sister and wants her approval all the time. They play together; dressing up, bouncing on the bed, talking on the phone, stacking blocks, grabbing things from each other. She names toys, even though sometimes we don't understand her words or her logic. For example, her great-aunt gave her a handmade doll as a gift and she promptly named her something that to us sounds like "car keys." Puzzled but tickled, we christened this doll Sally Carkeys. She makes us all laugh with her weird pronunication of words like pasta "ba-da" and water "wa-ga."

These days her favorite word is a pretty clear one: NO. It's a very physical word: she scrunches up her face and furrows her brow and shakes her head. Her whole body says no right along with her. I don't even know what to say about that except I think that is pretty normal for a two-year-old. If there were going to be one milestone she was ever going to reach in a timely way, this is not the one I'd pick, but at least she's got the cognitive ability to make decisions and know what she doesn't want. Silver lining maybe, but I'll take it.