My wife and I will be doing the First Day of School thing this week, and not for the first time. But this one feels vastly different, genuinely nerve-racking.
Kailey is only 3 – she hits that mark today, in fact. That’s why she’s allowed to start school Wednesday. Well, that and being born at exactly 24 weeks gestation and weighing 1 lb., 6 oz., rallying from the brink of death a handful of times and still eating through a gastronomy tube. Her twin, Breley, survived only two days.
The kid has had a tough road, although you’d never know it just by looking at her. She’s got a mop of curly brown hair and these bright green eyes and this vibrant spirit that can dominate our six-person household.
But there are scars, too, many of them. On the left side of her ribcage, the result of a heart surgery at 21 days old. On the left side of her stomach where her g-tube is. That surgery took two tries, the first ending when her bronchial tube spasmed in an attempt to fight off intubation. She gained a couple of pounds in water weight – a huge bump when you only weigh a few in the first place – from that and lost most of her hair.
The visibility of the emotional damage she’s absorbed comes and goes. She dreads doctor appointments for obvious reasons, crying over even the simplest procedure such as getting weighed. The more inexplicable freakouts are the most difficult. On Saturday, she lost it when a small paper cup she was using became soaked with frozen yogurt and had to be thrown away. Believe me: These are not just toddler tantrums – they’re far more intense, akin to night terrors without any sort of sleep state. We’ve come to view them as events of overstimulation, like she just can’t deal with what’s coming at her be it a visible, audible or mental event.
While I’m not a doctor (see: my paycheck), I have a theory on this, that being born incredibly early – the brink of viability, we were told – exposed her to the outside world before she was ready. That’s one of the reasons noise and light is controlled in the NICU – to prevent babies from being bombarded by stuff that isn’t in play in utero. Now, we see why. In hindsight, it’s sort of amazing that she’s right on track for her age in terms of cognitive development.
Kailey is also extra susceptible to respiratory illnesses because of chronic lung disease, another symptom of prematurity. And she’s developed a vomiting habit – that’s not a joke. For most of her life, she’s been fed a special formula via g-tube, the volume forcibly increased over time so as to force her stomach to grow and accommodate development. Being pumped full of liquid made her puke at least once a day for most of her life, either due to getting overfull or as her body’s way of trying to clear more room for her underdeveloped lungs. Breaking her of that instinct in the months or years ahead may prove as difficult as teaching her to eat through her mouth; right now she chews food and spits it out, an aversion to swallowing attributed to being hooked up to a ventilator for so long.
Meanwhile, she has never attended a daycare, not in a home or at a center. Instead, she’s stayed home with me or my wife or the small army of nursing students hired to spell us. (Having a job that requires me to work on nights and weekends has turned out to be a major blessing.) It’s been great in terms of sheltering her from illness and developing deep bonds. But she hasn’t learned how to, say, play with peers or stand in line or go to recess.
Because of all this, we’re more than a little unnerved by what’s to come. Kailey has enough ongoing issues to qualify for the early childhood program in Sioux Falls, meaning she’ll go to preschool four afternoons a week at the nearest elementary school – my wife teaches there and our oldest daughter goes to school there. It’s nice and new and just a couple blocks from home (yet it might as well be located on the moon for how foreign the experience is bound to feel). The program will incorporate all the therapies she previously received at home – did I forget to mention those? – in addition to getting her ready for traditional school over the course of as many as three years.
She’ll learn how to share blocks and follow directions from an adult that’s not a relative and perhaps be encouraged to try new things. And she’ll struggle because all new school kids do.
And we’ll struggle as her parents because to this point we’ve been there almost constantly, holding her hand and explaining in a calm voice the very small portion of the world that she’s experienced. “What happened?” she often asks, looking for us to provide interpretation of an event. Now, she’s going to have to start to make sense of things on her own.
We’ve done this before; our oldest daughter is 9. But she was born full term and as healthy as could be. She went to a home daycare and a center and a preschool prior to jumping into kindergarten. She was ready without a doubt and thrived exactly as we expected.
With Kailey, we have no idea how things are going to go nor will we be able to watch it all play out. That’s probably the hardest part: She has needed us from Day 1 – a day that came far too early – and still does more so than most kids her age. At least, we think she does.
The early childhood program held an open house night a couple of weeks ago; our whole family attended and we made it out to be a big deal, hoping to encourage Kailey to get excited rather than scared. She met her teacher and checked out a bus and walked up and down the hallway with a sort of swagger, her curls bouncing behind her.
It won’t matter if we’re ready for this next step in the journey as long as she is.