As with most preemie parents, we take Madeleine and Reid to a lot of appointments. They currently see a paediatrician, physiotherapist, occupational therapist, neurosurgeon, and ophthalmologist, and probably will continue to for a while. The list may grow longer as we discover other issues and needs. When babies are born very small and very early, things tend to go wrong, they tend to need extra help, so these appointments are put in place at discharge (sometimes they even begin during their NICU stay), with the intention of providing as much help and assistance to these little ones as early as possible. You get a team of people on your side, a reassurance that you won't be alone in advocating for your children. It's a good thing.
But there's a downside too, a pretty big one, and one that you don't always see or notice right away. And maybe you just chalk it up to being an oversensitive new mom, because, hey, all of these people are trying to help my children. But maybe, if you're like me, you start to dread your children's upcoming appointments. You try to stay upbeat and receptive to the suggestions you're given, but then you leave and go cry in the car on the way home. You call your husband and he sighs and says, "well, they're just trying to help, right?", as though he needs just as much convincing as you do.
Today, we had a visit from the twins' occupational therapist, a wonderful, caring woman I like and respect very much. I had wanted to talk to her about some concerns I'd been having, things like the way Madeleine hasn't been interested in finishing her bottles lately, or that the quality of the noises they've been making haven't been as good as the other, younger babies I've come across. I wanted to talk about sitting and crawling, since we were told they should be sitting and crawling in one of our previous appointments. Except, really, I didn't want to talk about any of those things. Really, I just wanted her to say that we were doing a really good job.
The thing about early intervention is that all of these people, these wonderful experts trying to help your children, only see little snapshots of who they are during the appointment. Maybe Reid isn't moving as much as he should, or sitting up - but maybe it's that he just woke up from a nap and is not in the mood to play. Maybe Madeleine isn't showing you how well she babbles and reaches for her toys, but perhaps it's just that this appointment was booked right after she normally eats and her belly feels too full to comfortably play or chit chat. Sometimes we'll have an appointment where Reid is feeling happy and alert and wants to roll around and grab everything, and they'll say, "he's doing so well!". But we'll go somewhere else and Madeleine will get the praise, while Reid sits grumpy in his stroller.
It's hard not to feel like these appointments are just tests that you have to pass. And it's so hard to determine whether you've failed. Is Madeleine passing toys between each hand? Does she always roll to the right, or the left as well? How long will Reid sit up unassisted? What does his babbling sound like? The answer is, well, I don't really know. I don't always notice which direction they're rolling, I just know that they roll. I don't know exactly what sounds Reid makes, or whether Madeleine passes her toys and brings them into midline, but I do know that she likes to munch on avocado chunks, and that Reid loves it when you blow raspberries on his belly. I know Madeleine smiles with her whole face when she sees her brother, or her dad, or the dog. I know they love it when I sing them made-up songs while I make their lunch. I know that Madeleine likes to scream for fun. I know that sometimes Reid likes to be held for no reason at all. Are those things on the checklist?
I guess I just can't help but feel that Madeleine and Reid will either do the things they're supposed to, or they won't. If they are physically and neurologically capable, they will figure out how to sit and crawl and walk and talk and run - because that's what people do when they are physically and neurologically capable. If they aren't - if Madeleine's brain has been too damaged, or if Reid has some kind of bigger issue we aren't aware of - then they won't, not because we didn't try hard enough, or because we didn't have enough experts on our team, but because they just can't, and that's okay. So if these problems are fixable, if it's something they will probably grow out of with time and patience or maybe a little extra help, and then one day it will just be a weird quirk they had as babies, by all means, let's work on it. But if these problems are just who they are, then maybe we should just let it be. It won't be the end of the world. Nobody has a magic wand.
I struggle sometimes wondering if I'm being too laid back, too hands-off, not fighting hard enough for my kids. But I also know that Reid and Madeleine always know when I'm worried, when I'm trying to push them to learn a skill quicker than they are ready for, when I'm not enjoying playing with them because my brain is screaming SHUNT! HEARING LOSS! CEREBRAL PALSY! END OF THE WORLD! Maybe they won't sit or crawl or stand or run, or attend Harvard or win a Nobel Prize (or maybe they will! Who knows!). But I do think that maybe, just maybe, they'll learn that their mama loves to sing them silly songs and snuggle with them in bed and thinks it's not worth worrying about if they do things differently or experience the world in a different way. Maybe they'll just end up happy, knowing that they are loved, knowing that who they are - whatever that looks like - is enough.
Maybe.
It's easy to forget all the emotions that go along with EI. My son just graduated from his last intervention two weeks ago, after four years of therapy. You echo so many of the feelings I felt along the way. It's hard, very hard, to have expert after expert tell you what is "wrong" with your child when your focus at home is what is "right" with your child. I can't tell you the number of times I cried after an evaluation where he didn't test well or even when one therapist suggested that he was headed toward a CP diagnosis (which never came to fruition).
ReplyDeleteWhat the years taught me, and what advice I'd give as your journey is just starting out, is to take everything said with a grain of salt. These people are experts...but they're not experts on your children. You are the expert on your children. Yes, they are just trying to help, but if you need something said in a different way, tell them so. I insisted that all assessment meetings start with the good stuff before diving into the concerns. After all...our children are alive. It that not something to respect and marvel in...even if just for a moment?
As time went on I cared less and less about the statistics. My little man proved to me that he'd get there when HE was ready, not when a therapist expected him too. One benefit of the micro-preemie thing is that their growing up goes at a slower pace. I've treasured the extra time I've had at each milestone, and have been ever more appreciative of the milestones he's achieved. Remember in the end, they're your children and you have to do what fits for your whole family (yourself included). Do that and you will have done right by them :-).
Thank you so much for sharing this, Sara. You raised so many wonderful points that are so easy to forget when you're still new in the game. It certainly is easy to forget that parents really are the experts on their children - especially when we've spent so much time needing to rely on doctors and nurses in the NICU. And I never considered the benefit of the "extra time". I think all parents, but especially preemie parents, can become preoccupied with the milestones, but you're right - it does go slower and we do get more time at each stage! (What a blessing that is!)
ReplyDeleteYou have reminded me though, that what is probably the most important part is taking time to discuss the good stuff. It is ALL amazing, regardless of what it looks like, even if there are concerns to discuss. So many of these little ones really should not even be alive, let alone doing as well as they are. No matter what problems arise, or what challenges we may face raising our children as they grow, it is absolutely worth celebrating that they are here, and they are living, breathing, amazing little people who are much, much more than just the circumstances of their births.