My first child was as textbook as they come. She was (and is) smart, precocious, funny, curious, outgoing, busy and beautiful. Everything she did happened just like the pediatricians and books said it would. As a baby she laughed and chattered to herself during play, and babbled at us constantly. On all fours she was a rocket, and at 11 months she walked, then ran and has been a kinetic force ever since. She spoke early, and by age 3 was able to have lengthy arguments about bath time or vegetables or turning the TV off for bed. My mother, at that time, labeled her “a contrary”. By 5, her temperament and sentiments had turned sweet and helpful.
Eden was just easy. She grew like a weed. Wasn’t terribly picky about food. Liked, and was liked by everyone. I thought I was a pretty good mom, because we were ticking off developmental milestones and stages like clockwork and she was just consistently a pleasure to parent.
So of course when I got pregnant, 11 years after having Eden, I figured I was in for my second easy child. I was older, more confident in my parenting abilities, and looking forward to doing it all over again. I was convinced I was having a boy, since I’d always assumed I’d have a child of each gender. Although I’d wanted to be surprised the first time around, Allen and I chose to find out the sex of our baby. We were both sure it was a boy. When the technician administering the ultrasound told us we were having a girl, we were floored. She also told us that everything looked beautiful with our baby. Fingers, toes, spine, brain. A perfect little person in her watery world.
Lucy’s birth was mostly easy. It happened so fast that it was like getting hit by a truck, but after 13 hours of laboring with Eden, I thought the brevity more than made up for the pain. 5 hours, start to finish, and I was in my bed holding my second beautiful daughter in my arms. Eden had a very hard time getting going with nursing. We ultimately got it right, but I was prepared for really having to work at it with Lucy, too. Instead, Lucy latched on immediately and nursed like a pro right away. It was the last easy thing about her.
For the first year of her life, Lucy gained weight beautifully. She rolled over, sat up on time, crawled a little later than some, but still on a “normal” schedule. Though she was meeting her milestones, she had an unexpected temperament. She was hyper-attached to our nuclear family, but no one else could hold her. We have a big extended family, and so we’d go to dinner at my folks’ house and everyone would be talking and laughing and bustling about and Lucy would just lose it. It became a routine. Go somewhere public, have a desperate, wailing baby. We learned to just stay home. And she was a very quiet baby. Hardly any cooing or gurgling or babbling. Just big eyes, watching, taking everything in until it was too much. We just thought she was introspective.
Things started changing at about a year and I chronicle those things in some other posts on this blog, but the long and short of it is that over the next 2 years, Lucy was diagnosed withApraxia of Speech, Dyspraxia (or global Apraxia) and Sensory Processing Disorder.
It has since been 3 years of research, doctor visits, diet changes, supplements, and physical, speech and occupational therapy. 3 years of special arrangements, explanations to family, friends and strangers, of worrying, of wondering why, of hoping someday she will catch up.
We’ve made a lot of progress in the years since our special needs journey began. We now have a 4 year-old who can run, and climb, and jump. We didn’t know if that was ever going to happen. We have a child who, while small for her age, continues to grow and learn and charm us with the new things she does that are all the more precious for how hard she’s worked to do them. But we don’t have a 4 year-old who can speak. She has some words. A very rudimentary vocabulary. One of the most insidious things about Apraxia is that a child can gain a word, and then lose it again. 2 years ago, Lucy could say, “I go.” Not anymore. But now she can say, “hot dog” and it seems to be sticking. Apraxia is mysterious. Apraxia is a bitch.
Today is National Apraxia Awareness Day. Today, lots of families are out there hoping to share facts and stories about Apraxia so that maybe soon, it will get the attention and research funding it deserves. There are lots of things we take for granted when we haveneurotypical children, like my wonderful daughter Eden. Children who say to us, “My name is…”. Or, “My tummy hurts.” Or, “I’m scared.” Or, best of all, “I love you.”
Lucy feels those things. She knows all of the words in her head. She says them to me with her eyes, and her hands, and her hugs. But not with her voice. One of the greatest wishes I have in my life, one of my greatest prayers, is that someday we will be somewhere, like the park, or the store, or out to dinner and someone will say to her, “Hi Sweetie! What’s your name?” And instead of looking to me to answer for her, she will just say, “Lucy”.
*For more information about Apraxia, click here