Tuesday, April 16, 2013

Nostalgia For The Future

This weekend I tried to sync my phone and I couldn't because it was too full. I couldn't even update my podcasts because of all the pictures and videos taking up space. I had to pare down. But how to decide which ones to delete? I plugged my phone back into my laptop and backed everything up on iPhoto. But I couldn't actually bring myself to delete anything from my phone. What if I had a few minutes on the subway and wanted to look at pictures from when Bee was eleven months old and we took her to the Met that one time in the rain when she wore her purple boots? I just wasn't ready. It took me another two days to start going through them all. I had more than 2300 pictures and videos of the girls. I ended up looking at all of them. "Awww!" I cried. "Johnny, remember this? Come look!" We spent hours watching the videos, laughing, remembering how tiny Bee once was. Hard to believe. She's talking in complete sentences now, so it's incredible that barely a year ago she still spoke in single words and short phrases. She was so little, with such fine hair and soft curls. Pictures of me, hugely pregnant. Pictures of Teeny, newborn. She was stunningly beautiful, her birth gentle and peaceful and perfect. She was a new life, so full of hope. Big dreams, big potential. A big future. Big sigh. We put the phone down. Our photo fun was over.

At work, my direct reports and I do Book Club. We read books on management and leadership together and we meet every week or so to talk about them. Recently, we read a book called Linchpin by Seth Godin. The book talks about how to make yourself indispensable at work and in your career. It argues that we are more than cogs in a wheel; we are artists and the art we create is a gift. It talks about how to develop your creativity and how to turn your work into art. What struck me the most in the whole entire book was one part in particular. And it struck not me-as-boss or even me-as-writer. The part of me that was tearing up as I read this leadership book for work was the me-as-Teeny's-mama. The passages that follow in italics are right from the book, page 203:

For many of us, the happiest future is one that's precisely like the past, except a little bit better.

Reading this on the subway a couple weeks ago, I was suddenly wide awake. I sat up and whipped out my yellow highlighter.

We're good at visualizing this future, and if we think it's not going to happen, we get nostalgic for it. This isn't positive visualization, it's attachment of the worst sort. We're attached to an outcome, often one we can't control.

I swallowed hard. This described me at my very worst. I'd never seen it put into words before, and here it was. I thought of the many times in my life I had been completely undone by nostalgia for the future. Like the time I was dumped by a boyfriend I now laughingly refer to as "the meathead." For so many reasons, this guy was not the one for me, and deep down I knew it. He was smart and motivated and funny, yes, but also completely fake - saying one thing emphatically to me and swearing up and down to someone else that the opposite was true. I hated his music, his politics, his work ethic. He hated my social activities, my determination, the way I questioned and debated everything. We fought a lot. But he broke up with me first and all I could think about was back when we first met, that honeymoon phase in which he could do no wrong. Back then we had so much potential. The relationship was rife with possibility; we were just getting started. In our early days, we'd fantasized aloud about marriage, kids, a home and a life together. A year later and we were done with each other, both of us well aware that we were not a match. He was ready to cut the cord and move on, but I could not get past the fact that we once both thought we were in love. Why aren't we like this anymore? I asked myself over and over. Why can't we fix it? What did I do wrong? I'll work harder. We were there. Don't leave me - I know we can get back there! Even though I really knew we couldn't and that he wasn't the one for me. It was just so hard to let go of the future I had envisioned with him, even if I knew it couldn't ever happen.

And Teeny. I carried what I thought was a normal, healthy baby girl for 39 weeks. When she was born, she looked perfect. (She still does.) When she was less than a day old, I held her in my arms and talked to her -- like I did her sister. I told her how much we wanted her, how loved she was, how her whole life was ahead of her. I told her about all the things we would do together, how much in the world there is to explore, to see, and to do. I told her about school and work and travel and love and sadness. I read to her from my favorite book in the world, The Phantom Tollbooth, which teaches just how much there is to do in life if only you put your mind to it.

If you had a chance to remake your life with a wish, what would you wish for?

Of course I wish that Teeny didn't have cerebellar hypoplasia. I wish she had a normally developed cerebellum and pons, like everyone else. I wish she could walk and talk with the ease that other children her age now do. I wish that at barely nineteen months of age she didn't have the busiest schedule in the family. I wish we didn't spend so much time in hospitals and doctors' offices that it makes an impact on Bee too. When we visited the Please Touch Museum in Philadelphia this weekend and walked through the pretend hospital section, I wasn't the only one horrified by the pretend MRI machine. Really? I thought. This is supposed to be fun? But instead, I said, Look, Bee! Wanna play here?

, she said simply and firmly, walking right past the hospital to the pretend supermarket. I wanna go food shopping, she said, and muscled her way over to the child-sized shopping carts and began to pile one high with produce.  But I was still stuck, back there by the pretend MRI machine. A child lay on his back, sliding into it, while another donned a white coat and peered somewhat doubtfully into the apparatus. There were young children placing baby dolls on stretchers, listening to their heartbeats with toy stethoscopes. This was not fun for Bee, and I couldn't blame her.

There is still so much potential for Teeny. I know that. I know that the things I talked to her about when she was brand new are not impossibilities. But her life is already not the one I planned for her. What's crazy is that I think the future never really happens the way we want it to, right? And yet, grappling with the nostalgia for a future that will never happen the way I wanted it to - even if I know it never would have anyway -- is the absolute hardest part about this whole thing for me.

If I could remake my life with one wish, it would be that this were not such a huge part of our lives.

The stressful part is the hoping. Hoping against hope that your plane will arrive, that you won't miss it, that your seat won't be given away, that you won't crash, that you'll land close to on time. Hoping that the surgery will turn out okay. Hoping that your boss won't yell at you. All of this is nerve-wracking for many people. 

Do you ever do this? It is so me. Embarrassingly so. Running late for a meeting on any given day, I am on my way to work. I am sweating bullets, pulling at my hair, squirming in my seat on the subway. Whether I am late or not, I have a half-hour train ride, and bouncing up and down like a four-year-old needing to pee isn't going to change the fact that it is still a half-hour ride. Then I still have a ten minute walk from the train, resisting the urge to text my coworkers like crazy saying "I'm almost there! I had the worst morning ever. You wouldn't believe what happened. Okay, in the elevator now, I'll be right there!" I can not possibly get there any faster. I may as well relax and listen to music, read my book, review my notes for the meetings I have that day, or just close my eyes and enjoy my commute. But no. I am twisted in knots, driving myself crazy, worked up into a frenzy, as if this self-torture will exonerate me from my tardiness. It's insanity. And yet I do this with everything. I am the busiest, the harried-est, the stressed-est. But why? There's no competition I can win. The juggler with the most balls in the air when she dies doesn't get anything but an early death. People tell me a thousand times a day, "I don't know how you do it." And honestly? I don't either. I'm not enjoying myself. I don't want to pile on the responsibilities, the stresses, the obligations, because it's not going to make Teeny any better. And yet why does admitting that my life is overwhelming feel like I'm admitting I'm a failure? Why does coming right out and saying I cannot do everything feel like I therefore cannot do anything?

And the reason is your nostalgia for the future. You've fallen in love with a described outcome, and at every stage along the way, it appears that hope and will and effort on your part might be able to maintain the status quo.

Boom. Propelled forward by this notion that if I just hope it hard enough, will it hard enough and put enough effort into her recovery, I can fix Teeny. That if I will her hard enough to walk, if I send her to enough specialists, get her enough therapy, her brain will heal and she will live a normal life. But that is as useful as banging my head against the wall.

A few weeks ago, a good friend who is struggling with special needs parenting issues of her own said to me, "I can't imagine doing this forever. I want to just fix it and be done with it. I can't imagine still going through this when my son is six or seven."

I don't really know what the prognosis of my friend's situation is, but I do know that someday, Teeny will be six or seven and her struggles will not be over. I don't know what those struggles will look like, but I do know that her life will not be the one her father and I envisioned for her when we held her as a newborn. She will be sixteen or seventeen someday, and she'll be struggling then too. And she'll likely still be struggling at sixty and seventy. I know this, but I don't know why it matters. Bee will likely be struggling too. So what that Teeny's struggles will be different? That doesn't mean that they will be harder or worse. It's unknowable and there is nothing in the world I can do to know it except wait. Do the best that I can for her every day just like I do for her sister, and that's it. Hearing my friend was like hearing Teeny's voice in my head telling me, Mama, I need you now. Stop trying to fix everything. I'm here now. Enjoy me now. Love me now. Today.

It's been a long six months since the MRI revealed what it did, since we got the preliminary diagnosis, since our lives changed forever. I am still sad. Looking at her newborn pictures, unable to delete them to make space for more, I thought about how little I knew then. If only I knew then what I know now, I'd... what? What, indeed? I have no reason to feel any differently now than I did then. Teeny's whole life is still ahead of her. Teeny is happy. Why shouldn't I be happy too? Her arms are getting stronger, so her hugs are getting tighter. Her laugh is louder. When she is excited, she claps and yells "Yeah! Yay!" She says mama all the time now, murmuring mamamamama as she hops across the floor to me, pushing herself back into a W-sit and holding her arms out to me. Mamamamamama she babbles, crying if I don't pick her up fast enough, pulling herself up by my shins, my knees. If I acknowledge her and walk past, she puts her fingers together over and over, frantically signing more more more. More mama. More love. She puckers up and leans in for kisses now. They are wet and sloppy but they are delicious.

So I am letting go of my nostalgia for the future. I know grief is a normal part of the process, but enough is enough. I don't want to be crippled by what will never happen and what might never have happened anyway. I keep reading that most of the things we worry about never come to pass, so I know deep down that the future I envisioned holding my newborn baby is as unlikely to happen for Bee as it is for Teeny just because nothing ever works out exactly the way you think it will. And what do I really know, anyway?

I know that so far, parenting has been a lesson in admitting that I have control over absolutely nothing.
I know that I have two beautiful and happy daughters.
I know that Teeny has everything she needs for today.
I know that her daddy, her sister and her mama would do and are doing everything they can for her, but also that there is nothing any of us can do that will fix her.

Maybe Teeny doesn't need fixing.

I am slowly beginning to understand that I can't fix this. Not because I'm not good enough, but because it's just not fixable. Teeny isn't broken.

What I can do is focus on what needs to be changed in myself instead. I am more present for her now and within moments of realizing that the best thing I can do for her is be here now with her, I found myself falling more and more deeply in love with her. No amount of will or of effort can maintain the status quo. There is nothing I can do to preserve my memory of the past or force the future as I envision it because in fact, there is no status quo. Teeny already had cerebellar hypoplasia when I held her as a newborn. I just didn't know it. So my truth is what needs changing, not hers.

This morning, I had a few rare moments with Teeny all to myself. Her early morning therapy was cancelled and Johnny took Bee to school. She and I hung out in our pajamas and I fed her the special cereal concoction I make for her every morning (these days it's gluten-free Peanut Butter Puffs with flax meal and ground walnuts in rice milk) and we sang her favorite song. Bee calls it the "Teeny do-do-do-do-do-do" song, but you probably know it better as Sugar, Sugar by the Archies. We sing Aw Teeny, do-do-do-do-do-do, aww, Teeny Teeny... you are our Teeny girl and you got us lovin' you... and she dances and claps with delight.

We danced around as I changed her into a summer dress and stood her up in front of a mirror. Teeny loves mirrors and so do we. Mirror play shows us that Teeny knows who she is and that she is separate from us, which is an age-appropriate milestone. She points at herself and says "ba" for baby. She points at me in the mirror when I make a silly face. I sat on the floor and held her in a standing position by her hips while she and I stuck out our tongues and blew raspberries and pointed at our reflections. We sang Sugar, Sugar again with our own words. We laughed together until her legs buckled and she put her arms out for me to hold her. I held her tight and she held me tighter. Mamamamamama, she murmured. I breathed her in and felt present with her in the moment, just holding her and loving her for who she is right now. So maybe it's safe to delete some of these pictures. I want to make space for new ones anyway.


  1. Both girls are so lucky to be in such a good intelligent thoughtful caring family. I'm sorry I don't check in more often, I do think of you guys often.

    1. Thanks so much for your thoughts, Karl. We feel exactly the same way about you guys! Much love to you three.

    2. what a wonderfully written excerpt of your life with Teeny and Bee. Thanks so much for sharing!! Martha

  2. Thank you for sharing your soul. Stunning writing. I fell deeply in love the moment I laid eyes on your baby beauty girl...and you. You've got it right, mama....mamale! By George, I know you've got it!! Keep holding the vision. All is truly well and F is here teaching volumes about love, light, perspective and what perfect truly is.
    One of the best quotes ever : Worry is like praying for what you don't want to happen. Keep breathing and loving, as you, J, and your girls continue to reveal the world to one another.

    1. Arlene, much love to you. Thank you for your cheerleading. Your words give me strength. The line about worry being like praying for what you don't want to happen really struck a chord with me. Thank you for sharing that pearl of wisdom. <3

  3. I found your blog kind of randomly, and I will have to read more later when I'm not at work (don't want to have to answer questions on why I'm crying) but I just wanted to say how happy I am to have found this blog. I think we have a lot in common.

    1. Tori, please reach out again! I am curious about you and your story, and would love to learn more.

  4. Thank you so much for writing this today. You have no idea how this mama needed to hear these exact words right now. Someday I will write to you more about why this touched me so much. But, for now, know that you made a huge difference in my life with the writing of this piece.

  5. What a beautiful post. I can relate a lot to this but more so from the stance of trying to build our family. It took a long time for me to come to terms with infertility and that our family wasn't going to grow the way I had imagined. And it was especially hard when I thought that my dream of a future with a big family was never going to happen. So yes, grieving for a future that might not ever happen was so very painful. In the end, the future dream did come to fruition but the path there was so angst filled.

    I have two girls with special needs. We have always known they had a special need since we adopted them. I hadn't planned to adopt a special needs child, and who really does plan to have a child with special needs. We all wish our children's lives would be carefree and not spent in therapies and extra doctor's visits. And we wish they could do everything that their peers will be able to do. What has helped me so much is their amazing spirit. They are just filled with so much happiness. They live in the moment.

    And I really felt so much truth rang true when you said "Teeny isn't broken." Our children are perfect just the way they are.

    Thank you for sharing your heart with us.

    1. Rebekah, thank you for being here, for reading, and for sharing your story. Even though our stories are different, a lot of the emotions sound the same. I love what you say here. Teeny too is filled with so much happiness, and she too lives in the moment. I really think that's the key and that Teeny is often wiser than I am.

  6. I also found this post somewhat randomly, but your story was very beautifully written, heartfelt, and it made me want to give you a hug. Not say "everything will be better" or "It'll be ok"....just give you a hug. As parents we just want a good life for our kids, and I think you're sad for yourself, your idea of your future, but you're more sad and frustrated because you don't want either of your kids to struggle. But neither of them know any different of a life, they enjoy it because they have loving parents, and they have each other. Thank you for sharing your story. Breathe!

    1. Thank you so much for your comment! I can always use a supportive hug. I think (and hope) that you're right on all counts.

  7. Such a great post. Brought tears to my eyes.

    1. Nikki, thank you. Glad to see you on the FB page. <3

  8. Your girls have a gift, just by having you as their mom.

  9. Wow, Aimee... this isn't just a blog post, it's a fully developed essay. You hit all the marks, and damn girl, very often when I read your stuff it very much feels like I've written it myself. This one in particular... every bit of it -- it's ME.

    You wondered about your daughter at 6 or 7... well, my boy is almost 10 and while things have gotten infinitely better, we have our rough days. Yesterday was one, in fact, so I'm glad I read your blog when I did. It's comforting to know you're not alone in this fight. He had lost a race unfairly and was howling at the playground, tears streaming and drool spilling, and his NT friend just could not understand the problem. He kept saying "it's not a big deal, man" but for my kid it was the end of the world because a rule had been broken. These are the days we just have to breathe and hope tomorrow will be better.


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