Monday, January 28, 2013

The Absolute Value of Life

I have a number of friends and coworkers who were pregnant at the same time I was pregnant with Teeny. We sweltered through the summer together, we nested together, we complained together. One kept a blog about her subway rides, logging in detail whether she got offered a seat, by whom and how long after she stepped into the train car. Two were coworkers of mine and a third was the daughter of a coworker, so every work day brought a new conversation about babies and pregnancy woes. Another was the friend of a friend who lives very close by. We hit full term one right after the other and I placed bets in my head about who would go into labor first. Making an entrance at 39 weeks by spontaneous labor and beautiful HBAC, Teeny was the second of the group to be born. That was the only milestone she ever met early. Following the other babies on Facebook, meeting their mamas for tea, and otherwise watching these little ones grow made me absolutely certain that Teeny was not developing at the same pace as her peers. One by one, I watched these other babies roll over, sit up, pull to a stand, and walk. Now they are running around. They dance. They talk. They sing. They are toddlers.

At 16 months, Teeny is not a toddler.

This weekend we had a playdate with one of these babies. Her mom, my neighbor and now very dear friend, has been nothing but encouraging and loving to Teeny and to all of us. She gets right down on the floor and snuggles with her, plays with her and accepts her for the person she is with absolutely no judgment. She doesn't make me feel like the Special Parent I resist being. But it's hard to see her daughter - a beautiful and smart child I adore - doing all the things I want Teeny to be doing. I love to watch this precious girl as she grows, but the very-hard-to-admit truth is that when I see her I am also jealous and sad. I think of all the things Teeny should be able to do that she cannot. I see the many things I wanted for Teeny, and for Bee as her big sister. I am sad for Bee, who can't play with her sister the way she should be able to. I am sad for Teeny, being left out because there is so much she is not yet able to do. On Saturday, my friend and I chatted and caught up. As we talked, we realized with delight that we were applying to the same preschool for our girls. If she is accepted, her daughter -- two weeks younger than Teeny -- will be in the toddler class. Teeny, if accepted, will be with the babies.

Rationally, this is okay with me. Even before we knew about Teeny's needs, I felt lucky that she is a late September baby. As long as she is in private school in New York City, she will miss the cutoff of September 1, so she will be older than all of her classmates. This is to her advantage. I was always among the youngest in my grade, which was hard for me not because I struggled to keep up intellectually, but because I was far less socially and emotionally mature than my peers, which made life difficult and often painful. While Teeny does test within the normal range for cognitive abilities, there is no question that she is behind kids her age in many ways, so I think it can only help for her to be among the oldest in her group. But hearing that her closest pal will be in the class ahead of her stung me a little and made me feel like she was being "left back" before she even got started. I had to remind myself that I want her with the younger kids.

And if that didn't suck enough, at the same playdate, it became clear to me that I was not the only one who felt jealous and sad. She might not be able to walk up to me and verbalize this, but I now know that Teeny is well aware that she is not like other children her age.

Her big sister Bee loves when people come and go. She loves visitors - and with three therapists and other home-based workers, there is no shortage of people parading in and out of our apartment every day. Bee loves to wait at the door and give our guests grand greetings and farewells. She's big on kisses hello and goodbye, and lately she's begun to exclaim, "Mama! I am so happy to see you!" when I come home from work in the evenings. When I leave in the morning she always accompanies me to the elevator. This is a long process. She will "ride you to the elevator" on her bike if she can get on it fast enough, "scoot you to the elevator" if you wait for her to get on her helmet and shoes and dig the scooter out from behind the glider where we stash it, but mostly we tell her she can take her feet to the elevator, which is an excuse for her to run up and down our long hallway, press a lot of buttons, and stall you from actually leaving. Sometimes one of our cats will sneak out and go with her because the huge production she makes is so much fun. And when our friends packed up to go on Saturday morning, Bee wanted to see them off as she usually does. This time, Teeny was right behind her.

The few times Teeny has elected to help Bee throw a hello-goodbye party, she lingered by the door and watched everyone else run down the hall. This weekend, she bunny-hopped right over the threshold. By the time she got there, Bee and our friend were halfway down the hall. Bee ran the length of the hallway to the elevator and back, and she and the other little girl were squealing and giggling as they chased each other. One tripped and fell, got up laughing, and kept running, and then the other bonked into the wall as she ran, stumbling and howling with laughter. Teeny was so fired-up by it all: she was wild-eyed, babbling intently and shaking with intense excitement. She propelled her little self forward as fast as she could, one arm over the other, pulling her legs under her in her modified crawl. At first I tried to help her the way our PT taught us: I held her knees and tried to get her to alternate legs as she crawled. But this was no time for a therapy session. This kid was on a mission: to get to the elevator with her sister and her friend. She gave it her all but she was just too slow. I walked behind her, noticing how erratic and jumpy her movements looked because she couldn't make herself go as fast as she wanted to. The whole time she kept her eyes fixed on her buddies as she hopped like Frogger, pulling her bent legs beneath her. Soon I heard little indignant grunts; she was getting frustrated. My friend waited patiently down the hallway, cheering her on the whole time while keeping an eye on the other two girls, and I hung back, still watching her movements. Halfway to the elevator, I couldn't take it any longer. I couldn't watch her struggle for another second. I scooped Teeny up in my arms and gasped at what I saw. Her knees were bloody and raw with rug burn from trying to race across the carpet. She was trying so hard to keep up that she hurt herself in the process, and I was so overwhelmed with sadness for her that I felt faint. We waved to our friends and I carried her back into the apartment.

When her knees were cleaned up and she had settled down for a nap, I had a moment to collect my thoughts. It felt terrible to have such ugly emotions stirred up by the presence of our dear and wonderful friends. And yet I knew it was normal. I am not done being upset. I am not done being angry. I spent more time that afternoon lashing out at people I love than I care to admit, even though I knew I wasn't upset at any of them. Why can't this be something you can get mad about and get over, like someone being late or forgetting your birthday? I feel a tremendous loss that may never go away, and knowing that Teeny is now catching glimpses of it too absolutely breaks my heart.

With Bee I had to learn that I couldn't protect her from everything. Life is frustrating for everyone. I had to accept that she needs to be able to deal with a healthy degree of frustration in her life. That meant taking a step back and watching my kid take some blows that I would gladly have suffered for her a thousand times over. But we're all the better for it -  Bee is a growing up to be a pretty resilient kid and I am a proud non-helicopter parent. But mothering a child with multiple needs is making me learn this lesson all over again in a different way. I am angry in advance: at the kids who might make fun of her down the line, at the schools who might not want her someday, at the people who will see her as different, slow, weird, unlovable. I am afraid in advance that someday my daughter will be alone. I am scared that her sister will not want to look after her once I am gone. And right now, today, I am troubled by having to make decisions for her. Right now we are trying to decide whether to send her to a part-time private preschool in the fall. Will she need mainstream school or special needs based? Will she be lost in the sea of neurotypical children or will her age-appropriate abilities be challenged in ways that will help her? Is special education more appropriate for her physical needs, and will it be enough for her cognitively? What will her life be like eight months from now? September is an eternity away. It has not even been three months since the day the earth stood still, the day we got the results of her MRI. A lot can happen in eight months; maybe she'll be walking. But what if she's not?

Teeny is going to be different from her peers, but how? None of us can say. The hardest part in this for me is not knowing. That makes it so hard for me to resist comparing her to everyone around her, which is a lose-lose situation no matter what. Because I don't know what will happen, I can't protect her from other people or even from ourselves. Hell, I can't even protect myself from my own big, messy and scary feelings. I have to feel them no matter how much they suck, and she has to feel her feelings too. Just like I try to guide Bee through her preschooler tantrums in a loving way, telling her I am sorry she feels sad/mad/tired/whatever but that I am unable to give her everything she wants, I can be there for Teeny. Right now I feel like my job is to help her break her personality out of prison. To me she is a self still on hold, still simmering, unable to move forward because she is bound by her physical disabilities. I want to help her her to blossom, to sing, to fill the world with all that I just know is brewing under her surface. I will never be the kind of special needs parent that believes that this disability is a gift. I will never see this as a blessing. I wish so hard she didn't have it. Who signs up for this crap? But I can practice radical acceptance and teach Teeny to accept the absolute value of herself - not as something inherently positive or negative but just as another human being who is. I want her to love herself as much as I love her. I can push her to do her best every day and teach her what I truly believe: that her life, no matter how different it turns out to be, has value.


  1. Aimee, thank you for your courage. I know you wish you did not have to be courageous. In this battle you will always be struggling with that-which-might-have-been AND that-which-is. Know that Teeny will be inspired to reach in these struggles, as we all are inspired to reach beyond our abilities. There will be things she can't do, but then Bee will have things that she can't do either. They will be different things.

    1. Mary, I love your comments and your thoughts as you look back on your experience as a mother of three who all seemed very different from each other right from birth. Thank you.

  2. I want to say that your post really hit home for me.

    I was born with Club feet, which is a physical deformity, and spent my early years in casts/crutches/wheelchairs.

    I was never good at sports (or even moving around) and would often get jealous of my sister for being really athletic. I often pushed myself too hard - injuring myself, and I can remember multiple times of crying to my mom that it wasn't fair. That it hurt to do things that were even below the "normal" range for my friends.

    But you know what? Even if every single moment of badness was magnified 100times, its all still way worth it looking back. The empathy I learned from these situations has lead me to some of the best friends I could imagine. In addition, my relationship with my mom is excellent. She taught me that it is ok to fail, or to be not the best at things. What matters is trying, working to better yourself at whatever pace is best for YOU, and not giving up. Also, I learned a lot about finding creative solutions so I didn't need to walk around so much. Innovation is the child of necessity is definitely true.

    I am sending good thoughts your way. I know this isn't an easy road, but I feel like after reading this post, you are headed on a good path.

    1. Maureen, thank you so much for this comment. I am so happy to know your story and especially that your challenges led to such success. You sound like a very hard working and fortunate woman. And I hope like crazy that one day Teeny says the same thing about her mom, too.


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