A rushed and frenetic birth, the first I heard about my new baby came from my husband. "She has enormous thumbs!” Other things were said, things about the doctor still being 10 minutes away, about the cord wrapped around my baby’s neck, about questionable apgar scores. But I didn’t hear those things. Only my husband’s seemingly proud exclamation about her thumbs.
I didn’t think anything was wrong.
They let me hold her eventually as they talked about low blood sugar. She was tiny, just over 6 lbs. I briefly considered what my mother might have thought when they handed me to her, her 8th child, weighing only 4lbs. They advised that she wait to name me just in case. But she never thought anything was wrong and called me Teresa.
As I held my own new little life, I was excited and tired. She was not due for another 2 weeks and we barely made it to the hospital before she arrived. The staff in the room seemed to be busy and urgently fussing. But I had been through that with my first born, when the doctor immediately declared upon her birth that Cate had a club foot. Without even looking at down at her tiny bent little foot, I knew even back then that nothing was wrong.
I held my second daughter just minutes old and called her by her name for the first time, Addison. A flash of incomplete and inarticulate notions came and left quickly as I regarded the folds on the inner corners of her tiny almond eyes. I did not know then they were called epicanthic folds. No one else seemed to notice them, slight as they were. But I did for a moment. My thoughts flailed and then retracted. “Hm, I’ve seen kids with disabilities with eyes like these.” As quickly as it came, something held that wisp of a thought up in the air and let the wind take it away. Despite looking at the same eyes for countless hours thereafter, the thought did not waft back or settle anywhere near this mother. Because I knew nothing was wrong.
Nursing had been difficult for my firstborn and the first day or so looked to be the same for my second. The lactation consultant came with the same rather obvious advice as I’d gotten 4 years back with Addie’s older sister. But she also mentioned a high palette perhaps making things a bit more difficult. Still my baby and I toiled and tried and shifted and tried again. I did not have the stamina or distractability to wonder if something might be wrong, single-minded as I was on getting her fed.
In the middle of that hospital night, someone came to take her from me and feed her from a bottle. I protested - a déjà vu from my first daughter. Testiness or despair must have manifested in my refusal as the medical professional used an authoritarian tone to enlighten me. “You need some sleep. I know you are concerned about your daughter’s prognosis, but you need to sleep so you can be rested and make appropriate decisions for your baby.” I had no idea what she was talking about. What decisions? She needs to eat, sleep and be cuddled and changed. I get it. Sure, I realized we had taken her for a full body x-ray and a chromosome test within hours of birth. The fact that both thumbs were wide and angulated made the doctor suspicious of a “pattern” that would need to be identified. But nothing amazing was found in the x-ray and the chromosome study turned back nothing. We said yes to these tests to get them to leave us alone with our daughter. And now this professional uses the word prognosis. While I’d have been assured I could define it for you in the past, at that moment I had no clue why she should be using such a term in reference to my Addie. To me, nothing was wrong.
Since her early years are a series of flashes, flash forward to various surgeries to correct her thumbs, her toes, to another surgery that was to entail a simple overnight stay. That procedure parlayed into serious illness, 6 nights in hospital and a very buried subconscious understanding that it was remotely possible that she would not be coming home with us from this particular procedure. But that understanding was so guttural and unwelcome, so ensconced, it never made it to the surface until after she finally was, indeed, home safe and sound. There was no room for it in all that needed to be done, all that needed to be decided upon to help our sweet thing get to the other side of her grave and precarious situation. Weeks later I watched her laugh and I knew that once again and perhaps still, nothing was wrong.
Addie has Rubinstein-Taybi Syndrome. In her case, it presents with some physical issues, as well as some medical and cognitive differences. Health crises aside, the most poignant aspect of her diagnosis for us is the fact that she is non-verbal. We knew this was a possibility when she was eventually diagnosed at two and a half years old. She had said only a handful of words before then and they seemed to be fleeting. While she cannot gather her sounds into the planned, organized and repeatable patterns that lead to words, she is highly verbal in other ways. She hums and buzzes and squeals, thrums and tongue taps in random (to us) ways. She is nearly always making some sort of sound. She communicates adeptly through her own personal innovations, through American Sign Language and through a computerized communication device.
People, both kids and adults alike, have at times overtly observed her for a brief or extended time and then, without guile, bluntly asked “What’s wrong with her?”
I have had to grow gradually in my view and response to this question. It’s one I myself may have asked, if it weren’t for a mother’s stubborn focus on only those thoughts that actually help her child move through something , her complete selective obliviousness to those notions that lead to paralyzing negative mind-locks that hinder the small people she raises. It's hard to answer that question when you have built up and hold tight to the belief that it's a moot inquiry.
In early days, this question asked by expectant strangers would slice me through and through. I could do nothing but let it pass without response or on rare occasion, hurl a defensive zinger back, something meant to hurt the asker equivalent to my hurt, meant to permanently end the exchange. Those were hard days. The next phase was to generously meet them more than half way with the benefit of the doubt by pretending they had used the word “different” instead of “wrong.” I’d answer by patiently and age-appropriately explaining the differences one with Rubinstein-Taybi might have. This led to greater understanding about her diagnosis, but not about my daughter as a person. They still thought something was wrong and now they had a name for it.
My current response is rooted in the belief that if I allow the word wrong to reference the whole person my daughter is, she can never be right, she can never be whole or unbroken, she can never be just the right person for the job – whether that job is weather watcher at circle time at school, a paid career as she grows, a favor or just being a friend. If the asker were to address Addie with the question, “What’s wrong with you?” they would get no answer, no credit for deserving an answer at all.
And so it goes now when I am asked -
Lady at the table next to us at the bagel shop: What’s wrong with her?
Me (Worried look, quick movements toward my happy child, rapid talking progressing to slow and deliberate): Wrong with her? Why? Is she bleeding? Did you see what happened? Adders, are you ok? Oh, I looked away for just a moment…well, that’s odd. I don’t see anything - no bruises, no coughing, she’s not upset at all. In fact, she’s smiling and signing, eating the bagel she just ordered herself (point to communication device briefly), waving her friend over. Hm. Honestly, nothing at all seems amiss, nothing appears to be wrong, so I’m not sure… (eye contact) Oh, hey, are YOU alright?
If she is ready to talk about disability and differences in ability, she will find a way to let me know. If not, another day, another child, another mother.
Addie turned 8 yesterday. I took her swimming at the small water park we belong to, which is not only a birthday wish, but her wish for every single day – granted on most days in the summer. She began her measured ascent to the top of the water structure that blossoms from the middle of the kids' pool. It branches out into slides and pulleys and a plethora of squirting spouts and spraying contraptions. The climb takes her a while, but I understand I’m to wait at the bottom now. She came to the very edge and looked down for me as I stood in ankle deep water, shielding the sunshine so I could see her face and await my cues.
She intended to make it clear to me that she was indeed having a happy birthday. Yes, she knew there would be her favorites later: pesto, garlic bread, singing, jokes, cake with extra frosting and presents. But to convey her happiness with this very moment, she would initiate an ASL call and response. It’s part conversation, part song and part dance for us. Though the themes can change, 2 things are consistent: 1) she is the leader and 2) each turn is hurled and received with this ever present message between mother and daughter bundled with it – I see you as you are and you are exactly right.
The rest of the water park and its inhabitants continue at the usual clip. Addie above and me below, we begin the process of slowing time, just for us.
Addie: Rainbow (signed quickly)
Mom: Rainbow (signed quickly)
Addie: Rainbow (signed slowly, a test)
Mom: Rainbow (signed slowly, a passing grade)
Addie: color red
Mom: Color red, color orange (protocol allows me to move to the next color)
Addie: color red, orange yellow
Mom: color red, orange yellow (here I must only repeat, anticipating her twist)
Addie: favorite? (devilish giggle as she lobs the first question, she thinks she has me)
Mom: orange, favorite? (touché)
Addie: Yellow. Color green….
Our eyes never release the other's as we take turns - comments, questions, answers, laughs, slow signing, quick signing, exaggerated signing, stylized signing, changes of subject, returns to subject, etc.
This is our language, our relationship, our connection. We understand how it starts, where it’s going and now to navigate it. We laugh and shimmy with each turn. Out of the corner of my eye, I can see other swimmers slow and pivot their eyes from Addie to me and back again. Kids beneath me stop splashing a moment to watch; moms on chairs subtly raise their sunglasses and squint. I venture they aren’t quite certain what they see.
But I do know they don’t see anything wrong.
Such lovely writing. Thanks for sharing.ReplyDelete
I would dearly like to borrow your response to 'what is wrong with her?' for the people who ask me the same question (as though my son isn't present).ReplyDelete
But I don't wish to take anything from your beautiful gift.
What a birthday! Than you for sharing it with us,
Great response! Love your focus and attitude. :-)ReplyDelete
Such a lovely vision you create of you and your daughter conversing. I am very moved by the special language you share.ReplyDelete
This is beautiful. My son does not speak yet, does not communicate with much intent at all. But we have our own way of being together, games we play, looks we exchange. I feel the connection you have with your daughter here, and could see time slowing down for the two of you. If I were at the pool, I might stop and stare, but only to be in awe of your wonderful relationship!ReplyDelete