Sticks and Stones

Last week, someone called Teeny the r-word. 

I wasn't there for it, but hearing about it from Johnny felt like a kick in the stomach. He was taking the girls to the Y for their swim class when it happened. On our street. On our block. Where we walk a hundred times a day. There was a group of teenagers leaving the playground that my family was walking past. It went something like this: 

"Look at that girl in the stroller. She looks fucking retarded."

"Dude, she probably is retarded, just look at her father."

"That thing behind the stroller? Oh shit, that's a man?"

"Look at that fuckin' faggot. Do you see what he's wearing?"  

Blissfully, neither child noticed anything because Johnny stayed calm and didn't acknowledge them. He just walked them past the group and to the Y. Then he called me. And a million things went through my head at once.

First, I tried to make Johnny feel better. I tried to make it seem not so bad, like it was no big deal and he should let go of his feelings. At the same time, I thought it was sort of ironic that not four hours earlier, I had posted this video on Facebook:

This video validates the power of words and why words like the r-word are never okay. (Also, I just loved Paul!) I scrolled back down my page and watched it again and I cried thinking about all the people in the world who are marginalized for some real or perceived reason and have to suffer the indignity of being disrespected or mistreated. I cried thinking about my own child who will someday have to find a way to tell mean kids and adults to go fuck themselves, that she is as capable as anyone else. I cried thinking of the times she has already said "I can't" when I encourage her to do something by herself that might be really hard. 

Then I got angry. I thought about all the times Johnny or I have been called names and we'd never spoken up for ourselves because we feared for our safety. Johnny's been called a fag a million times. Lots of times when we walk down the street together, men catcall to us "ladies." Cashiers and customer service reps call him "ma'am." I have been called a dyke. A poser, a loser. Freak. Walking past the gutter punks on the Lower East Side back in the 80s and 90s, they'd always catcall at me. "Oh my GOTH!" they'd howl. We have been teased for our clothes, our music, our hair, our shoes, his accent, my last name, my being Jewish, our economic statuses, even our veganism. At the awful summer camp I was forced to go to for ten years because my mother worked there (and therefore I went free), I got made fun of for my area code (really!) and for living in an apartment instead of a house. I was tormented when I was little just because there always has to be someone and I was an easy target. The kids made me cry and because I always cried, they tormented me more. After a while I stopped saying anything to the kids who picked on me and cried alone instead. But the pain didn't go away and by the time I was 12, I had stopped crying. I'd learned to take it out on myself. Eventually, I really believed I deserved their hate and that I deserved to be punished. The ACT UP activists were right. Silence really does = death. 

I cried because I don't want my daughters to learn that kind of self-harming behavior. I cried for my younger self, for not feeling like I'd had a support system to help me get though my adolescence and early adulthood. I experienced rage and depression and twice I attempted to take my own life because I felt so alone. I also cried because I felt compassion for those teenagers, growing up without being taught to love and respect others. I felt sad that they probably go home to families who use words like that all the time. They probably thought they were being funny or cool or maybe they just didn't think at all. I felt sorry for them because I was an unhappy teenager too and I remember very clearly what that felt like. I had hated the world. I had hated my life. I know there were things I did and said when I was with my friends that hurt people I didn't even know, maybe for no other reason than I was trying to impress some kid so they wouldn't make fun of me instead. I cried because as I remembered my own adolescent behavior, I felt shame for judging these kids -- and without ever having seen them! I made assumptions about them based on what they said and where they were and I hated them for doing something that 25 years ago I was probably doing too. 

So I told everyone I knew about what happened. I shared on Facebook. I texted friends. I told coworkers. I wanted to expose this dark thing to the light, to diminish its power in whatever way I could. Turns out everyone I know has a story. Most people I know are or feel marginalized in some way, and many in multiple ways. The world has become a much more tolerant place than it was even very recently but we have a lot of work to do before I am convinced that we are really there. This may have been the first time Teeny was called this awful name but it won't be the last. As her mom, I want to give her all the tools she will need to teach the haters a thing or two. But the truth is that I don't have them. I am still a crybaby. Words still really hurt.

I know she is loved. I know she is growing up in a family that embraces difference and diversity. I know she will have good days and bad days and that every day she will come home to parents and a sister who will listen and be there for her consistently and lovingly. But in the face of cruelty, we will have to trust her to find her own way. I wish I could package this up as a teachable moment, but it's too painful. Instead, it just has to suck. I hate that I look over my shoulder every time I pass the playground on our street, wondering if the teenagers hanging out by the baby swings are the ones that accosted my family.

We've had some really wonderful days since then. Teeny had and loved her first hippotherapy session. We went to the ballet at Lincoln Center and saw Cinderella. We played in the park in beautiful sunny weather. The girls got cookies and smoothies at Peacefood. We bought them new sneakers for spring and when they got haircuts they left with pink balloons. And yet it lingers. Its ugliness, pervasive. If I had a nickel for every time I heard as a kid that sticks and stones can break my bones but names will never hurt me, I'd be a millionaire. I didn't believe it then and I sure as hell don't believe it now. It's in the back of my mind. Etched onto the insides of my eyelids. I can hear the word in my ears when there is quiet. It makes me look at my daughter differently. It makes me whisper the question to myself: Well, is she? 

A mom I know of a kid in Teeny's class shared a story with me. She said that she overheard a little boy on the playground ask his dad "What's wrong with that girl?" The dad said, "There's nothing wrong with her. What's wrong with you?" I loved that and it stuck with me. I know there's nothing wrong with Teeny. She's perfectly right just the way she is. What could be wrong about someone who makes me -- and so many other people -- so happy? But what's wrong with me that I'm still struggling a week after this three-second incident? What am I so afraid of? I accept her and love her and get so much out of knowing her just the way she is. Why can't I accept that other people might not? I say I don't care what other people think. So why does it hurt so much? What's wrong with me?

50 Things I Love About Bee

These days I can't take my eyes off of Bee. She is changing so quickly! It's like I can see her growing, and I can't get enough. 

So to follow up on my recent post with 50 things I love about Teeny, I could not help but think about 50 things I love about Bee today:

50. How she says "Mama, I want to tell you something. I... I just love you." when she wants to hear her voice but doesn't know what else to say.

49. When one of us leaves and she asks the other if we think the other will be okay. "Daddy will be all by himself! Do you think he will be okay?"

48. Hearing her sing "I'm all about that bass" under her breath. "I'm bringing booty back!"

47. She was the happiest kid in the city on Halloween in an outfit she concocted from various items in her wardrobe. I asked her which costume of all the ones she'd seen that day she liked best, and she said "The one I wore!"

46. She snuggles with me every chance she can get.

45. She can order a "venti decaf Americano iced no room" for me without even blinking.

44. Her skin.

43. Those cheeks!

42. How much she loves her sister.

41. When she asks me if she's special too and I can list 100 ways she is special to me without even batting an eyelash.

40. Watching her body grown and change from a stocky baby into a tall and lanky girl.

39. The way she says "pig-a-tails."

38. She's vegan because she believes in it and not because I force her to be. She loves her adopted turkeys Anna and Elsa.

37. She genuinely does not understand why people she loves might not be vegan.

36. Her artistic inclination.

35. She is easy to get along with.

34. The way she speaks her mind - openly and directly and also innocently. She knows no other way.

33. Her taste in music.

32. Watching her sleep.

31. Her beautiful bright blue eyes.

30. How much she looks and acts like me.

29. How she also looks so much like my maternal biological family that I think of my birth mother and sister every time I look at her.

28. Doing her nails.

27. She loves to splash in puddles.

26. Baking with her.

25. How she comes into my bed at night to cuddle with me.

24. The little heart-people and heart-cats she draws.

23. How much she loves school.

22. She likes to listen to me read chapter books aloud.

21. She loves taking car rides.

20. Her incredible memory. The kid forgets nothing, ever.

19. How happy she is outdoors.

18. She is totally unselfconscious and loves to be naked.

17. Her attention span.

16. Brushing her hair.

15. How much she likes to help with everything.

14. She tries to speak and write in other languages like Spanish and Japanese.

13. When she is silly and giggly.

12. Overhearing her ask a friend of mine if a treat she wanted to share with her was vegan (it was).

11. The random things she says that give me glimpses into her hardworking little mind.

10. How easily she uses an iPad or iPhone or asks for something that's "on Netflix."

9. She says she will always love me, always be vegan and always want to live with me. I'll take the first two out of three. :)

8. She's a wonderful little host when she has other kids over.

7. She likes to Face Time with me when I travel so she can see me, where I am, what I'm doing and what's surrounding me. 

6. When she requests overnights at Nana's house.

5. Watching her decorate this year's Christmas tree with her daddy.

4. Giving her the space to live her own life, develop her own opinions, make her own friends and just have her own experiences, some of which she shares with me and some of which she doesn't.

3. She draws glasses on pictures of animals to be silly.

2. That time I caught her saying "What the fuck!" in the mirror while pretending to be a grown up. Ha!

1. What started out as a fantasy I had while growing up of having a daughter someday turned into the best idea that Johnny and ever I had, which became a bump with a name that I carried for 40 weeks and then grew into a baby who changed our lives forever and is now her own person, growing and changing and developing and becoming more independent every day. We picked her name when I was only 20 weeks pregnant. Today she loves her name and has her own identity with this name that we picked when she was still an idea. I love hearing her say and seeing her write her name. Every single time I do, it reminds me that she is my dream come true. 

50 things I Love About Teeny

Last week was the New York City marathon. We live right on the course towards the end, so every year we watch as much of it as we can. This year was the first year Teeny could actually watch with us and follow along. It was a really cold morning, so we bundled up to head out early. As we waited for the elites, Teeny sat in her wheelchair and clapped for the para-athletes soaring by in wheelchairs of all shapes and sizes. Because it was so early in the day and it was very, very windy, we were among the few out there watching. There was no music, no party, no masses of people dancing and screaming and holding signs like there would be in another hour or two. It was an oddly melancholy moment. I felt a little like we were in a Giorgio DeChirico painting, standing there alone on the eerily empty, cold and windy corner of a street set up for a much bigger crowd. Most of the runners wouldn't see this particular intersection for another two hours or more, yet the para-athletes were zooming along one at a time, accompanied by some of the fastest cyclists I've ever seen. I stood next to Teeny, pointing out the different kinds of wheelchairs as they passed us. I explained to her what they were doing. We cheered and clapped and I wondered vaguely if any of them noticed her. I cried as I watched her watch them -- I couldn't help it. At mile 21, many of them looked very tired but they all had that determined look I know so well. It's the expression I see on Teeny's face every single day. 

Maybe Teeny will grow up to be a para-athlete like the ones we saw that day and maybe she won't. Maybe she will get a PhD or maybe a GED or maybe she will be happy well into adulthood just singing her ABCs. Whatever the case, a good friend said today that she will definitely surprise us. And it's true. She already has. 

The day we got her MRI report I thought my life was over. Two years almost to the day, I now know it's not about me. It's all about her. And my life is far from over. It's so much better, and that's so much because of her.

So since internet lists are all the rage lately, here are 50 things I love about Teeny today:

50. She loves the soundtrack to The Nightmare Before Christmas, which has been one of my favorites since the movie was in the theaters ages ago.

49. How she says "MORE AH-WEEN! MORE JACK! I want JACK!" when it's over. (She seems to speak in all caps quite often.)
48. She wiggles her butt when she's dancing.

47. The pure joy she finds in so many things in life.
46. She is able to use language to do more than express a need or a want. For example, when you call her name, she often answers with a deadpan "what," like a totally typical teenager.

45. Putting her on and taking her off the school bus is a family affair we all have come to love.

44. How she sings the ABCs and counts on her fingers to ten.

43. Her adorable little lisp.

42. She gives high-fives.

41. The way she has decided to call Johnny "dada" even though we all call him Daddy.

40. Her big round butt that is the only physical feature of mine she seems to have inherited and how adorable it looks in her new Hello Kitty or My Little Pony underwear.

39. She doesn't mind long car rides.

38. How she claps and shouts "I PEED!" when she uses the potty.

37. She uses the potty about 75% of the time now. We thought we might be changing diapers forever.
36. Listening to her repeat everything anyone says to her and knowing she's trying her hardest to understand and contribute.
35. Her big beautiful eyes.

34. Snuggling with her, breathing her in and having her ask me for more hugs and kisses, most of which she now plants squarely and very wetly right on my lips.
33. Her determination. I've never seen anything like it.

32. She's a fairly adventurous eater and will try almost anything at least once.

31. She hugs her baby dolls and makes them sleep, cry, eat and walk.

30. Her funny pronunciation of everything.
29. The way she says "I love you... too!"
28. She brushes her own teeth.

27. How she always wants to do everything by herself.
26. Except when she doesn't. "No. Mama do it!"
25. She has a crazy sweet tooth, especially for vegan chocolate chips, chocolate chip cookies from Whole Foods and any cupcakes I make.

24. How she refers to herself almost always in the third person.
23. She says "Easy, Mama!" and "Be nice!" when I get cranky.
22. She loves her adaptive ballet class and begs to wear her ballet shoes all the time.

21. How she turns the pages of books when we read to her.

20. Her little index finger, always pointing at something.

19. The way she sleeps, rolled in a ball, butt in the air.

18. Kissing her soft skin all over.

17. Watching her learn.

16. She's becoming very girly and often insists on wearing my necklace or bracelet.

15. How she says her own name.

14. She plays her dada's guitar.

13. She says hello and goodbye in such earnest that you know she's genuinely happy to see you come and sad to see you go.
12. She likes to wear costumes and play dress-up.

11. How much she charms everyone who meets her.

10. Kisses, band-aids and the little icepack shaped like a ladybug make every boo-boo better. And how she says "I'm okay!" whenever she tumbles because she knows we all worry she's going to get really hurt.

9. She loves Daniel Tiger, Piggie, Winnie the Pooh, Ponyo and many other endearingly sweet characters. 

8. She idolizes her sister.

7. She helps take out the garbage.

6. She likes to have her nails painted.

5. How badly she wants to walk and how hard she works at cruising, climbing and taking steps every single day.

4. She has surpassed every expectation any of her doctors or therapists have ever had.

3. I watched her come out of my body when I gave birth to her at home and I was the first person to hold her and kiss her.

2. Her amazing manners: she says please and thank you without being asked.
1. She gives the best hugs of anyone I have ever met.

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.

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

 

Hold for the last time then slip away quietly...

my mother died.

it's been four days, i think. and how do i feel? i have no idea. sometimes i feel absolutely nothing at all, like i will never feel anything again. also i feel a million things at once. i am devastated. i feel cheated. i am sad. depressed. unmotivated. i feel like i was robbed of this relationship that took about ten years to blossom. i also feel like i don't have the right to mourn the loss of my mother the way my brother and sister do. i did not grow up with her like they did and i already have a mother.

after a lifetime of feeling like the puzzle piece that did not quite fit anywhere at all, being in her presence was a relief. like kicking off your high heels after a long hard day and sliding into slippers that just envelop your swollen feet. hugging her, breathing her smell, looking into her eyes... i didn't need to be with her my whole life to hear that satisfying "click" of the puzzle piece fitting perfectly in place, or to know that she was a part of me and i was a part of her. it felt so good to be found. and i know it felt the same for her. what was hard was coming to terms with biology, with DNA. with both of us adopted as babies, we both believed so strongly for so long that nurture overcame anything nature could throw our ways. this, we learned, was not true. the connection was there before either of us was able to accept it. our lives may have been as different as day and night when we came together, but she got me and i got her, even when it would have been a whole heck of a lot easier for both of us if we hadn't.

i spent much of my life feeling unnoticed and unnurtured and uncelebrated and unheard. i was a crybaby to get attention (this didn't work) and ended up with nicknames like "Sarah Heartburn" which i didn't even understand, let alone find funny. i was told again and again that i had no sense of humor, that i had to learn to play by myself, that i was making a bigger deal out of X or Y or Z than i should. i rebelled and revolted and did all kinds of things that got different kinds of attention (this didn't help) which resulted in nicknames i'm not even going to list. the antidote to this materialized in my birth mother. she noticed. she listened and talked back. she nurtured and celebrated. all of which was validating in a way i'd never experienced. the relief i felt was indescribable. i had a soul sister. i wasn't alone with my sensitivity, my reactive and moody self because she was like that too. and that made it easier to be less sensitive, less reactive, and just more myself.

so it's all so wrong to be sitting here typing these things in the past tense. listened. talked. nurtured. celebrated. it's not right that there will be no more listening, nurturing or celebrating. she was so young, so healthy, so ALIVE. i thought we had years, decades. she was going to be at newbie's birth. she was the only one we wanted there and i knew there would be fallout from the other grandmothers in our lives but i didn't care. she would walk into our apartment and get right down on the floor to play with the baby. she sat on the kitchen floor and brushed cheerios and cat hair off her designer clothes and just loved on my kid. she held her for hours, unwilling to let her cry herself to sleep. she fed her and bathed her and just loved her - and me - from near and far. after a year of this, i began to imagine family visits for years to come. in my mind she was right next to me at bee's high school graduation, at her wedding. how can she be gone when i felt like we were just getting started?

and now i have more questions. what happens now? her family is family to me, but am i family to her family? do they want me around at all? do they look at me and see her and does it hurt or does it help? do i reach out to them? and if i do, how? and when? or do i back off? last week we talked about how many people would be so deeply affected by this loss. my sister said "she had a lot of love to give." i, too, have a lot of love to give and i want to give that love to my mother's family -- they are my family too. but how do i express this? how much do they know about me? what did she say about me? does it matter? do i have the right to be there, to ask questions, to expect answers? do i have the right to ask for a keepsake? will i become more comfortable with these details that we never needed to iron out? and what the hell do i tell people without having to launch into a long personal history that i don't particularly want to share? i can't say "i lost my mother" without feeling that i have to explain that i have two. though i may overshare in my blog, in the rest of my life i am somewhat tight-lipped. it feels weird and wrong to go into detail, like i have to make excuses or validate my feelings of loss. i didn't explain anything at work. i just said it was my mother. so what happens when someone walks up to my father when he is there to walk the dogs and offers their condolences on the loss of his wife, my mom,  who is at home and doing just fine? i don't want to explain and i don't want to hear "oh, it was ONLY your birth mother." she was the only connection i had to myself for so long when i felt so alone for even longer. she taught me how to be me when i hated everything about myself. she helped me see that even in my flaws there is strength. in being like me, she taught me to like me. so there is no ONLY. this is like losing a limb.

what does it mean to have two mothers? how can i be so devastated by this? i have only "known" her again for twelve years. though before that i thought about her in some capacity every day. we connected during the absolute worst, darkest, most unpleasant part of my life. i would not have blamed her if she'd never wanted to talk to me again. one of the first things she said to me was that all my life she'd only ever wanted to know that i was happy. and back then i definitely wasn't, so if that was her only wish, meeting me must have been heartbreaking. but for me, meeting her again was a whirlwind, getting to know her was like looking in the mirror. there was no mistaking the connection. we looked and acted so much alike. yet building a relationship was nothing short of a challenge, if for no other reason than we both led our lives with our hearts more than our minds. and there was just so much ambivalence and confusion and guilt about my birth. so much revisiting that neither of us wanted to do but both of us needed to. so much to undo, like abandonment issues, oversensitivity, guilt and anger (whether perceived or real). and yet there was so much good - we looked alike and talked alike, we felt alike and we loved and lived alike in so many ways. this nearly undid us as while it is so good to be like someone it can also be completely unhelpful and unproductive. and there is no code, no guideline for how to be a mother or a daughter to someone you know so well but have only just met, especially when we already had families with mothers and daughters - as well as sons and fathers - to consider but not compare. we were constantly hurting each other without intending to. yet we both tried. for years we tried. she'd call and leave message after message at times when i refused to pick up. i'd send long confusing emotional emails in response that sent her retreating into silence. we made connections both small and big, in fits and starts. for every two baby steps forward we took one back, but we were slowly coming to a place of peace. and when bee came, it all clicked and we were suddenly in a place full of constant and consistent joy and love. bee wasn't even a week old when she made the trip to us and we walked in the rain to lunch. she held my daughter and stared into her face. she said, "i know this face. i know this nose, these lips." she wept as she talked to the baby like she'd known her forever. then she looked at me with tears running down her cheeks. she asked now that i had experienced childbirth and held my baby in my arms, could i ever understand how she didn't keep me? can you ever forgive me? i cried and said you were so brave, so strong. i couldn't have done it. i admire you for being able to do what you had to do. and we are here now. there is nothing to forgive. it doesn't matter anymore. and it really didn't.

she has told me she had no choice. she had no options. still a child herself, her mother made this terrible decision for her and it's something she was never able to forgive. instead, she looked ahead. we were both able to focus on bee, this tiny little life that we were both going to get to keep.

so she became bee's grandma. she fussed over us all. she remembered our birthdays, our anniversary with gifts that were exactly what we wanted or needed, so festively wrapped that opening each box felt like going a party. she called and texted regularly. she drove four hours each way to take us to dinner, to babysit so we could go out. she stayed late or came early when she had business in new york. she talked to me about what made her happy and what made her sad, what she loved about life and what she found frustrating. i felt trusted. and she earned our trust. i never censored myself around her. she was the only person we left bee with and i knew we could count on her to be there when the new baby came. she opened her home and her life to us in ways no one ever did before. she bought a stroller, a high chair and a booster seat to help us travel to her more lightly and more often but we never even got to use them. we were supposed to visit for memorial day weekend to celebrate my husband's birthday and to make summer plans and talk about what we needed from her at the birth. i was looking forward to this visit so much. standing in her dining room without her three days ago as we packed up our cheerios and soy milk and got ready to make the sad trip home, my sister nudged me. "did you see this?" on the corkboard in the middle of pictures of bee and other family babies, next to the red sox season schedule, was a post it note with my name on it pinned to a handful of vegan recipes cut out from various newspapers and magazines. she'd been looking forward to the visit too.

i am now staring at the screen. rereading what i've written. not knowing how to end this. i am not willing to end this. i feel crushed by the loss of what we had but thinking about the loss of our future is so difficult that i can barely breathe. i need to focus on the positive. i feel lucky to have come to such a loving place with her and i feel honored that my husband, my daughter and i were among the people she loved the most. i am looking ahead to new beginnings with the family i was just getting to know and love too.

she sent me an email a few months ago that in five sentences made me happier than anything anyone has ever said to me before or since that i will close this entry with. it sums up everything i have written in a way that lets me know we were on the same page before she died and that she saw ahead of her a lifetime that included me and my husband and child(ren).

Aimee, more and more, I feel the joy inherent in our relationship. In some ways our type of circumstances can make for an extraordinary connection. We have so many real ties and resemblances and over time we have been able to shake off most of the haunting murmurs in our attics.

I am very very happy to have you, Bee and Johnny in my heart.

I love you.

I love you too.