Sunday, November 10, 2013

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.


  1. Take a little time,
    just look at where we are.
    We've come very, very far, together.
    And if I might say so,
    and if I might say so too,
    we wouldn't have got anywhere if it weren't for you, girls.

    Love is the strangest thing.
    Love does exactly what it wants to do.
    Love, girls, you know it's true.
    We're family, we're family, we're family, all of us and you!

  2. You guys are killin' me!! As beautiful as the day I met her. Darling F, in her "tanta" hat.
    So proud of you all. What a difference a day/moment/hour/year makes. Stunning writing, right to the heart. love is everything.....and you've got it darlin'.
    Hugs, Arlene

    1. Arlene, your comments mean so much to me. Thank you for being such a loving presence in my life. <3

  3. As usual, brutally honest and insightful. Your blog inspired me to write as well... Hugs from Islamabad.

    1. Monica, I found your blog and wow are you talented! I love reading about the details of your very glamorous and mysterious expat lifestyle. Thank you for your comment -- the things you do every day inspire me as well! Hugs from New York! Any chance you are coming home for the holidays?

  4. I love the story about the journey you have been on this past year. And, I totally got where you were coming from with your comment about "is she were a cat..." I think all of us have numerous occasions where we have said things that we didn't really mean but we just don't always know how to say the things we are feeling.
    I'm glad that all of y'all are adjusting, learning and growing together!

    1. Thank you for validating what I said. I still feel terrible guilt, but I had to put it out there to let other people know that it's normal. Like you said, we don't mean these things but we don't know how to express what we are feeling. It really is a learning process. And a loving process. This kid is worth it!

  5. I assure you that I'm not the only one out there who can relate to this. I would be lying if I told you I never had the urge to give up. If I said that a part of me didn't want to curl up into a ball and never get back up when I received my son's diagnosis. But here we are doing it. And these little people have stolen our hearts and shown them selves to be so much more than a diagnosis on paper. Way to give yourself grace for letting go of the darkest thoughts, and way to have an awesome little lady. <3

    1. Thanks, Ayah! Seeing your smiling face in the pictures you post with your son really inspires me. I can see how happy he is too. I am now at the point where I think Teeny is perfect the way she is. Not that I wish her neurological issues wouldn't go away. But she wouldn't be the same kid if she weren't the same kid. You know? I love her exactly as she is.

  6. I really love this post. I wrote to you on reddit a while back about my daughter and her delays. My daughter is about a month younger than Teeny (I think? her birthday is in October) and she is not talking yet. I also loved the bit about the "w-sit," we have been there! I also am starting to think about Preschool. I'd love to pick your brain about how you made the decision and what kind of preschool she goes to.

    1. Tori thank you so much for this. I would love to hear from you and talk about preschools. Please feel free to get in touch -


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