Speechless

Apparently, today is a day for my children to let go and move confidently into the world without me. Diva Girl isn't the only one growing up; today, Zen Baby cut some apron strings of her own. She talked to her surgeon.

To understand how huge that is, you need to understand a little bit about the Zen Baby. The quick recap is that when she was a baby, Regan pretty much stopped gaining weight after 4 months; from that point on, her weight gain was measured in ounces, not pounds. No one quite knew what the issue was (although of course, breastfeeding was blamed), and thus began our monthly visits to the pediatrician as I struggled to put some weight on her tiny frame and avoid a Failure To Thrive diagnosis.

Those visits were hellish for a couple of reasons. First of all, there was Regan herself, who was more Exorcist than Zen Baby during the exams. The shrieking, the flailing, it was brutal. Agonizing to endure as her mother. Each appointment left us both exhausted, weeping messes. And then there was the guilt and the stigma. Let me tell you, there is quite possibly nothing in the world that will make you feel more like a failure as a mother than being told that your baby is listed as Failure To Thrive. It's a scary, heartbreaking diagnosis. FTT babies are not deeply loved, well-cared for infants, coddled and cooed over and showered with affection and attention. FTT babies are neglected. Abused. Their parents are at best clueless, and at worst cruel. I felt like I was failing my daughter in my body--a feeling that was definitely encouraged by the medical establishment--and in my self. If she wsn't growing, it must be something I did, right? After all, everyone knows that happy, normal babies won't willingly starve themselves. To say I felt some guilt over Regan's issues would be an understatement.

Turns out, it wasn't my fault Regan wasn't gaining weight. Nor was it hers. It was the undiagnosed tumour that was slowing growing in her belly--bullying her organs all out of shape and stealing the vital nutrients she needed to thrive. A tumour that grew to a fantastic twelve centimenters in diameter before it was found by me, not the medical professionals whose care of my daughter had caused me so much anguish and anxiety. (A note here: a cancer researcher friend of mine assures me that 12 cm is a massive size tumour--nearly unheard of--for a full grown adult, let alone a 17 lb infant.)

So, there was a tumour in her belly. Which explained a lot. Her small size. Her negligible weight gain. Her crabbiness. Her hatred of tummy time. And the fact that it sounded like she was being murdered each and every time she was put in her car seat. While there a certain amount of relief in identifying an actual medical cause that wasn't bad parenting, the very real possibility that my baby had a horribly aggressive form of cancer and would likely die sort of took that shine off.

I'm incredibly lucky. Thanks to the combined forces of the Universe and the Canadian Health Care System, my daughter survived. The tumour wasn't cancerous--and in fact is such a freak of nature that it's still being intensively studied--and as a Canadian citizen, I was never once asked how I was planning to pay for the exemplary care my daughter received. Less than a month after the medical establishment stopped blaming me and started listening to me, Regan left the hospital, cancer free, but carrying more scars than just the one down her belly.

Regan was never a very sociable baby. Regan mostly liked Mama. She was a carrying baby; she didn't play peekabo, smile at strangers, babble for attention or do any of those social baby things. She was a pretty content, easygoing kid, but she was shy. And then she entered the hospital and endured a whirlwind round of invasive tests and major surgery. A critically ill 12 month old baby who had no idea what was happening to her. An infant just beginning to test out the uses of language, who found it useless when it came to the word "NO."

The first few days, whenever a nurse or doctor would have anything to do with her, she would scream "No!" as she thrashed and wailed, making her lack of consent clear. And I held her down, and helped the doctors to poke and prod her, murmuring nonsense and endearments as my heart shattered. By the end of the first week, she was no longer screaming "No", but she was still shaking her head. By the end of the second week, she was just screaming. Language and any attempt at communication had been abandoned, and it would be a long time before she was willing try again. When I took her home, my quiet baby had become a silent one.

She eventually started to talk again. First to her sister, and then to me. And gradually, she even became somewhat of a chatterbox, happily babbling about her thoughts and ideas throughout the day. But it took a long time before she would speak in public--long enough that I'd started googling "selective mutism" actually. These days, she often not only speaks to me in public, but will address her remarks to random strangers. In fact, it's become so common place that I hardly notice it anymore.

Except today. Today I noticed. Because today, for the first time in two and a half years, Regan spoke to her surgeon. It was a tiny voice, and little more than a hello and a goodbye, but in my eyes it was quite possibly as great an achievement as her first word and her first steps (taken with the aid of an iv pole, incidentally). Maybe greater.

Comments

I don't have anything to add except that I found this very moving, in story and the storytelling. :)

That is amazing. Thank you for the uplifting story. You and Regan are both inspiring.

you done gone made me cry this morning.

What a heartbreaking story -- with such a happy ending.

I love your stories and when you write like this. I mean, I love your blog all together but especially these kinds of posts.

Thanks for making me cry at work. lol

I heart that girl. And you.

How awful for you both. What a terrible thing, to watch your child realize her lack of power and control over her own body, but know it's not because you wish her ill, and to also know that she doesn't understand it yet. That's the makings of one strong mama, getting through that. Like you, for example...