Peter Gwydion

Developmental ideas from long, long ago…

We had our EI “evaluation” a couple of weeks ago.  It was just fine, and we really liked the people who came out - C, our services coordinator, and M, the nurse who runs the developmental tests.  At the evaluation, M found that Gwyn is actually just fine chronologically in gross motor skills - he’s learning to walk, crawling and climbing well, and quite strong!  His fine motor and language skills - which go hand in hand - were developmentally behind his gross motor skills.  Since babies often have growth spurts in one area, then have a growth spurt in another, this wasn’t surprising, and not worrisome at all.

Now that he’s crawling all over the place, though, I thought it would be great to have a teacher come in and show me some new games to play with him, so that we could enjoy each other more in this new developmental stage.  So, that was our plan - a teacher, specializing in fine motor skills, would come out twice a month to teach us new games and fun ways to help Gwyn’s development.

The teacher, E, came out for the first time a few days ago.  With her came K, a physical therapist.  While playing with him, K determined that Gwyn didn’t need fine motor skills therapy, but needed occupational therapy - that his tendons and muscles were supposedly somewhat tight, which would affect his ability to walk and balance normally.  What she saw was “very subtle,” but she said that it merited having an occupational therapist, and that his balance would be adversely effected until we “fixed it.”

As it turned out, K wasn’t even supposed to BE here that day.  She “tagged along,” then gave an opinion - based, again, on a very brief assessment - which totally changed the course of what we thought were doing.  And, as a result, I feel (once again!) like I have no clue what’s going on, like I shouldn’t listen to my intuition that Gwyn is fine.  It’s yet another “expert” telling me blithely that something different is wrong, which I need to fix or I’m failing my child.

I’m most upset because EI was supposed to be an addition to our everyday life, and not supposed to impact our relationship.  The way I understood EI was that Kevin and I would remain the experts on Gwyn.  We would incorporate new kinds of play, or new kinds of stretches, into our day, but that would be the extent of it.  Instead, I find myself going, “Is that normal?  Is that normal?” about every behavior Gwyn exhibits.  I’m analyzing his behavior instead of celebrating it.  It’s an unwelcome element, and I’m not willing to let that attitude color my relationship with my son through his babyhood.

We have another meeting with C, our services coordinator, tomorrow.  Hopefully she can tell us why K came in the first place, if she wasn’t authorized to.  We also want to know what this means for the two hour evaluation that we went through when beginning with the program.  Can its findings really be overturned by a physical therapist with half an hour to kill and no compunction about being “invited” somewhere?  If so, what’s the point?  How can we trust that the course we’re taking is the right one, if every “expert” they’re affiliated with has a different opinion on what the right course is?

Needless to say, it’s incredibly frustrating.  I don’t like feeling unsure about the treatment that we may or may not give Gwyn, especially when I happen to think his balance is just fine:

His love for the kitties is also doing quite well.

Impossibly, in two weeks Peter Gwydion will be one year old.  Emotions are running high right now.

I still feel acute pangs of jealousy and frustration when encountering pregnant women, or when parents talk about their “next baby” with certainty and without a second thought.  They know that they will have another pregnancy, and feel totally confident that it will be as uneventful as the first, resulting in a healthy term baby.  I am envious of their total confidence that sore backs, swollen feet and vaginal birth - the natural consequences of a healthy pregnancy - will be the biggest trials they face.  I am frustrated by their discussions of these “hardships,” while they remain blissfully unaware of what it feels like to watch your tiny baby struggle for his life and feel it’s your fault for selfishly bringing him into a world that, for him, was full of hardship from the very moment he was born.

Recently, the New York Times ran an article discussing the lasting sorrow that parents of NICU babies experience.  The emotions surrounding having an extremely premature infant have been likened by some experts to losing a child.  We lost the healthy newborn that we expected and the home birth we dreamed of.  We lost ubiquitous rites of passage that were important to us, like taking pregnancy photos, attending childbirth classes and a normal baby shower - one where I was pregnant with a big, gorgeous belly, excited about feathering a soft nest for my beautiful child to land in.

I know that ultimately our experience is much richer than the norm.  There is not a single day where I take Gwyn, or his good health, for granted.  Lately “amazed” doesn’t begin to describe my feelings as I look at him pulling up on the furniture, babbling and getting ready to crawl.  It seems impossible that he’s the same baby who was so tiny that I held his whole body in one hand, carefully placed to avoid all of the wires and IV’s he was hooked up to.  I am grateful in a way that only NICU mothers can understand for every little thing, because the little things represent so many problems we miraculously avoided.  He laughs at a silly face Daddy makes, and I am often grateful that the oxygen he required didn’t make him blind.  He bounces in his jumper, I am grateful that he doesn’t have cerebral palsy and will be able to walk normally.  He wets three diapers in half an hour, I am grateful that vancomycin didn’t destroy his kidneys.  All of this factors into our daily life together, and unless Lacuna Inc. opens a Bradford office, the memory of Gwyn’s babyhood will include ventilators, antibiotics and blood transfusions as well as nursing, naps and diapers.

So, as I consider the anniversary of his very early birth, I am joyous and proud.  I’m so grateful for my now-healthy baby - but I am far from “over it.”

Wearing the CPAP a week after birth