Minding the Gap
As we near my daughter's 4th birthday, I'm aware that milestone delays aren't the same as they were when she was a baby.
I went into parenting a special needs child with a cushion of mantras to help me through the first few years. Chanting inspiring quotes helps me believe inspiring quotes, so it wasn’t long after receiving my daughter’s Down syndrome diagnosis that I quickly adopted repeated self-talks including, “Don’t let the worries of tomorrow rob you of the joys of today” and “Comparison is the thief of joy.” I breathed the latter quote wholeheartedly in my first years of parenting a child with special needs, ignoring milestone charts in books and genuinely celebrating sitting, walking and talking victories of my friends’ kids, even though my same-age daughter was notably behind. And although my daughter didn’t walk until after her second birthday or graduate to a cup at a pediatrician-recommended age, she did pull out some unexpected feats along the way—like rolling over early—as if to tell us, “Don’t think you have me figured out. I’ll show you how it’s going to go.”
I have a friend who delivered twins a week before Nella was born. Our pregnancies were shared not just in joint lab visits for glucose tests but in talking about the future for our children—how fun it was going to be to watch them grow side by side, our little womb mates. After learning of Nella’s diagnosis, I wondered at first if it would be difficult to have such obvious reminders of where she’d be had she not had an extra chromosome, but I can honestly say watching my friends’ twins grow alongside my daughter for the past three years has never triggered any emotion other than happiness.
I think once you’ve had a few kids, you realize the hype over those first big milestones like crawling and walking isn’t something that should cause anxiety if they don’t happen right on time. In fact, after three kids, you know how quickly that precious babyhood window closes, so you might even take a delayed milestone as a gift—more time to hold your baby before she wrestles your grip to get down and be free.
I knew that. I relied on the comfort of “She’s my baby for a little longer” through the first three years of parenting Nella, and it smoothed out the sometimes bumpy road of special needs to a really peaceful place.
We are a month away from Nella’s fourth birthday now. We’ve filled up all the milestone blanks in the baby book—things like “clapping,” “waves bye-bye” and “first steps.” And because Nella has an older sister, I understand that the world of milestones gets far more complicated post toddlerhood. Simple questions like “Does she clap yet?” or “How many steps has she taken?” are replaced with more quantitative criteria. How many words in her vocabulary? How far can she count? How many sight words does she know?
The gap widens. I am aware of that.
There are more opportunities now for Nella’s delays to stand out. It takes her a little longer to master things, and as each year passes, “a little longer” stacks upon “a little longer” stacks upon “a little longer.” The result is that the small gap that used to be “three months behind” or “six months behind” for things like standing or walking is now more obvious. My friends’ twins are rattling off paragraphs, and we are joyously celebrating three-word sentences.
Does that make me sad?
Well, sometimes it hurts for a moment. I accept the pain and make room for it. But I also try and separate the validated sadness I feel for my child’s limitations with the sadness I think I’m supposed to feel based on society’s conditioning. We’re trained to compare our child with every other child. To take their success and happiness and immediately search for a standard against which to measure it. We want to quantify everything from percentiles for growth and IQs to number of Facebook likes and friends.
The reality of having a child with Down syndrome is that the physiological implications of an extra chromosome mean limitations. I accept that and yet I will challenge that every day of my child’s life by pushing, pushing, pushing for more for her. I know there will be times when the weight of my daughter’s limitations and their implications will feel heavy and sad, but I always want to be careful not to create unnecessary weight by comparing her life with someone else’s.
And isn’t that true of every child or even our own lives? It’s so easy to spoil contentment with measuring our accomplishments against another’s.
The best way I’ve managed to mind the gap of special needs parenting is to continue and focus solely on my daughter. Is she happy? Is she learning? Is she being challenged and given support for those challenges? Is she encouraged to contribute and celebrated when she does?
These are the milestones worth celebrating.
These are the milestones that bridge the gap.
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