I have been thinking a lot about parenting, or mothering (to be more celebratory today) lately. In part this is because mothering is a lot of what I am doing right now (let me assure you that it is much more fun to be a parent than it is to, say, grade blue books, even when the students whom you are grading have done a pretty good job. Blue books are still a tedious medium and, as a teacher, I'd prefer it if we could do away with testing memorized/rote knowledge and instead all agree to have a genuine intellectual conversation sparked by the reading and learning we are doing. Sadly, that often means very few students would do the reading and learning, so I feel myself compelled to do some testing to make sure that the work gets done. Anyway, I digress).
Good mothering is an involved process that forces a person to engage all of her senses to help her little one or little ones negotiate their universe, which is always a place of wonder but often can be a threatening environment, too. This is especially true when you are the parent of a NICU graduate who came close to dying rather too frequently and who has the odds stacked against her in all sorts of palpable ways. It doesn't help matters when you actually do lose one or more of your kids to prematurity.
These sorts of experiences turn one into a hard-boiled parent: you learn very quickly to assimilate the sense that you need to fight, and keep fighting, in order to enhance the chances that your little one has. You see your baby, all 1 or 2 pounds of her or him, hooked up to machines and wires, at the mercy of human and technical assistance, struggling to survive and you can do nothing but stand vigil. And so that's what we do, but in the process, a lot of us try like heck to learn as much as we possibly can about what our child or children are experiencing and assimilate all the medical lingo and technological jargon that we can wrap our brains around. So you learn about ventilator settings, MAPS, and PEEPS; you learn to make out a clump of yeast balls in the center of an echocardiogram; you develop a sense when an air leak is forming around a breathing tube; and you learn the ins and outs of why it's so important to check little tummies for feeding residuals.
That kind of knowledge and research often pays off: since you are watching your kid like a hawk, you know when she's doing something that's atypical before the nurses even figure this stuff out. And so you push, you pry, you query, you pester, and bug and you make the people who potentially possess the knowledge to do something about whatever is ailing your kid DO SOMETHING about it. More than once this helped us enormously: among other things, we figured out that Hallie was OD'd on steroids while in the NICU and we got the docs to take her reflux more seriously than they initially did. Even if we couldn't actually do anything much to help our little survivor, we could at least amass knowledge that would give us the capacity to weigh in on her treatment plan. (Please remember that we had very little in the way of conventional parenting experiences those first four months; even once we were able to hold Hallie, she was still hooked up to a breathing tube and would regularly crash out by experiencing a low heart rate--bradycardia--or she would just stop breathing--apnea.
There's nothing quite like the sight of watching your partner hold your baby while the nurses and respiratory therapists are manually bagging her to get her breathing again.) We loved--and love--the nurses, neonatologists, NPs, Respiratory Therapists etc who work in our NICU and have the utmost admiration and awe for everything that they do. We could not do their jobs. But it's hard as "type-A" parents to not have control over what's happening with your child. The way we dealt with it was by learning as much as we possibly could about what was going on. And we're still doing that now.
This approach to parenting--engaged and medicalized--carried over beyond the NICU and kept coming in handy. It helped us figure out Hallie's reflux issue, it helped us figure out that she was aspirating on thin liquids, it helped us figure out that she was allergic to dairy, and it helped us avoid the G-tube that doctors threatened to surgically insert into her tummy when she was resisting eating. It got her early intervention services within a month of coming home; it got speech added to that service portfolio even though there is a shocking lack of Speech Therapists in our city and countrywide--and an even bigger shortage where services for babies and toddlers are concerned; it got her speech added back in even after it was cut because the average of her receptive skills plus her expressive skills meant she was on target even though the kid couldn't say more than a few words at 18 months or so; and it got us an outside evaluation and private speech therapy services when more conventional approaches still weren't helping. Finally, it got us onto this path of trying desperately to figure out Hallie's immature digestive and allergic/immunologic systems and *may* get us to a point where we can finally resolve some stuff.
This is taking time, and it is frustrating, and in our frustration we become bristly people. We are trying so desperately to help our child feel better---and while I know this is the goal of any reasonable, decent parent (see below for counterexamples), it attains an even greater urgency when you feel like your kid has all the forces in the world ranged against him or her. In a lot of ways we are lucky parents of a NICU grad: Hallie has no mobility issues and her fine motor skills and cognitive/receptive skills seem intact. She doesn't even have too much in the way of sensory issues (though her board books and puzzle pieces, who have been chewed to pieces, might disagree). Her vision and hearing are fine. She looks typical, and while a bit slower on the playground to engage with other kids and more likely at first to be an observer, she does chime in and kids don't single her out as a target (and hopefully never will). (More on this, later, too). So we are very hesitant to call ourselves Special Needs Parents, because the needs that our kid has---speech issues and allergy/GI issues and feeding issues---seem so slight in comparison to many of the needs of some of the kids we have met along the way of this microprematurity journey. But we are Special Parents: parents who have been through a war and who have a pretty hefty dose of PTSD. And parents whose war is not over and whose war has no end in sight: we fight for coverage, we fight to get the right referrals, we challenge all of our practitioners if the things they are doing don't seem to be helping or do seem to be hurting our kid. And we try like heck not to fight with each other after hellish weeks of never ending vomit and never ending re-feeding, even though that's better than getting frustrated at our kid, and we end up pissing off people and pissing off ourselves when we stand firm on whatever ground we find ourselves because this seems to us--who have been through so much and who have figured out a few things along the way--to be in the best interest of our child. But hopefully the people we piss off will understand why we are so bristly and why we fight so hard: it's not a matter of being difficult, but a matter of figuring out a puzzle whose pieces don't quite fit together and the contours of which are constantly changing and which may, in the end, be unsolvable. But no one can ever say we didn't give it a good fight.
OK, so that's my view of good--if somewhat abrasive at times--parenting, NICU-graduate style. I hope that this year I can figure out how to be less bristly (it'll be nice if Hallie's allergic/gastrointestinal tract would grant me a mother's day wish of behaving themselves from here on in), but I do think that, in the end, advocating for your kid is a good parenting style. It doesn't matter if you have been through the NICU or not; in one way or another, taking little for granted and making sure that your kid gets what he or she needs is a very good thing for a parent to do.
But so is teaching your kid to be an empathetic and polite human being. This past week, a discussion that has raged on my micropreemie online support group revolved around the experience of a mom of another 23 weeker who took her surviving twin to a doctor's appointment that represented the absolute opposite of good parenting. Two boys who were seated opposite the family of the 23 weeker in the waiting room (around 6 to 7) started pointing to, making fun of, and name calling the 23 weeker (who is around Hallie's age). The boys' mom--who saw it all go down--actually encouraged the boys to generate more and more reasons why they did not like the 23 weeker ("she looks funny, etc") rather than do what any sane, good mother would do, which is make them apologize and give them a huge lesson in tolerance as soon as they were out of there.
We feel so awful that S. and her mom and dad had to experience this sort of thing and wish that people would think about what their kids were saying, how they respond to the 'darndest things' that come out of their mouths and how to turn these occasions into teaching moments and not egg on their kids this way. Honestly, folks!
Speaking of bad parenting, yesterday, we were down to visit Sharon's mom (a very good parent), sister Laura (a paradigm of good parenthood) and the cousins (all very good, tolerant, and largely well-behaved kids who are extra polite. Indeed, Hannah actually calls you out if you are not polite enough!). After some fun playtime at Grammy's condo, we headed off to Chuck E. Cheese (a frightening prospect, but it was kind of nasty out, and so playgrounds and Storybook Land were out of the question, and it was good to give the kids somewhere to work off their energy.
Hallie had a blast and really enjoyed playing in the Toddler area:
I found it a bit annoying (and somewhat dangerous) that older kids (10 or so years old) were playing a very fast game of tag in the toddler zone and kept racing up and down the slides and getting in the way of the little ones, but we managed to keep Hallie safe (and no other little kid was hurt). Still, I wondered: where are these tweens' parents?
But sometimes it wouldn't matter whether the parents were there, or not. Hallie closed out her Chuck E. Cheese session with a few dozen go-rounds on the Merry-go-Round. Cousin Adam was thrilled because he could hug and kiss and entertain Hallie and, even though Hallie held onto the wall (or whatever you call the inside of the merry-go-round) for dear life most of the time, she did seem to be enjoying herself more than the last time she was on one. When it came time to go, Sharon walked over to Hallie to get her off of the horse. But not before a four or five year old little girl (who was not much bigger than Hallie) went over to do so first. The kid began to push Hallie off of her mount and Hallie was kind of hanging on by one leg. Fortunately, Sharon swooped down and grabbed Hallie before she could tumble, but was stunned by the whole thing: where was this kid's parents? what was a five year old doing pushing a toddler off of a ride?
Turns out that mom was right there the whole time. So I decided to go up and speak to her about the incident. I tried to be nice (which is a bit of a stretch for me at times, particularly when my kid is at risk): "Excuse me, Miss. But I just wanted to let you know that your daughter just pushed mine off of a ride and you might want to just keep a bit of an eye on her. I am sure she didn't mean anything by this, but still...". Mom looked at me like I was from Mars or something and responded: "I know she did. She was getting her off the horse." WTF???? And that's OK???? Now I was stunned, and could do nothing but stare at the woman, slack-jawed, and walk away.
So much for parenting. I have nothing else to say. (Well, actually, I do, but that'll be in its own separate post)