Thursday, February 11, 2016

Both sides now

I don’t know about other parents, but for me the raising of each of my kids is a unique process.  And by that I mean that there has been very little I’ve taken from the experience of raising one child that I could simply transfer to another.  I guess that surprises me a little.  As it turns out, even this three-time mom is still just an amateur.  A three-time amateur.

Becca has knocked me completely off my game.  She is my greatest puzzle and mothering her has humbled me in a way I would not have expected.  Because of my education and training, and where I work and what I do, you might think that the little girl who struggles to communicate caught a break.  The truth is, she hasn’t.  I suppose she’s fortunate enough to have a mother who knows what to worry about and what questions to ask, who isn’t afraid to be demanding and call in a few favors now and then.  I guess that’s “fortunate.”  But really, in her day-to-day living she’s no better off than any other child with special needs.  I’m just another parent, trying to do whatever I can to help my kid.

This reality hit me hard this week.  I have spent over a decade on the other side of the clinic door.  I’ve collaborated with my fellow therapists to expand my knowledge and develop my skills, and I’ve established professional relationships that have spanned across time and distance. I’ve been assessing patients, and developing measurable, functional goals, and writing quarterly reports, and helping with transitions from hospital stays to rehab to outpatient to school.  I’ve talked with doctors and other therapists, and done my best to be an advocate for both the kids I have seen and the families that care for them.  I’ve fallen short sometimes.  I’ve gone above and beyond other times. But at the end of the day the note was written, the chart was filed away, and I went home to my relatively uncomplicated little life.

Wednesday morning I sat in the waiting room during hippo therapy.  There is a whole lot of coming and going on the hour as some kids leave and others arrive.  You start to recognize the kids and the families who attend at the same time you do, and you make your way through the obligatory smiles and hellos.  And probably because of what I do I tend to engage with the kids, observing their behaviors and skills like I do every day at work.  But then the children shuffle off and I’m left with the moms and dads, and that’s when it becomes uncomfortable because suddenly and unequivocally my role changes.  I’m not the therapist anymore, I’m the mom.  I’m Becca’s mom, who is there because her child needs help - just like the mom whose son is autistic, or the other one whose son has CP, or the other one whose child has Down syndrome.  We are all there, together, on the other side of the clinic door.  And the truth is that I don’t want to be there.  I don’t want to hear one mom counsel another about getting an advocate to fight for more services at school.  I don’t want to compare notes about how many hours of therapy our kids get each week.  I don’t want to commiserate about all the running around we do or how honestly, it just gets to be enough already sometimes.  So I smile politely and find a way to pull out of the conversation, and I bury my nose in a very important e-mail. Or, more likely, a game of Words with Friends.

I’m not entirely sure why I feel this way.  It’s certainly not because I don’t want to do what needs to be done for Becca.  Just like any parent I would do everything for her.  Every Single.Thing.  And it’s not because I don’t understand the system in which we are now full and active participants.  Actually, maybe that’s exactly why I feel this way: I’m no longer just another part of the system, I’m in the system.  I’m a member of a community where I’ve only ever really participated as a guest (and a frequently unwelcome guest at that).  I’m part of a culture where I never thought I’d live - only visit, peripherally, from the safety of my side of the medical chart.

But I don’t want to live there.  

I think it scares me a little to listen to the mother talk about her son starting his third year of hippo therapy, and aging out of First Steps, and working so hard to get services set up at school.  I don’t want this for my child.   I don’t want her to struggle.  I don’t want her to have to work so hard to do what comes so naturally for other children.  I don’t want her facing years of therapies and never-ending goals.  I don’t want to keep wondering when, or if, she’s ever going to get “there,” wherever “there” is for her. 

So actually, I guess, it scares me a lot.

I spend hours every week trying to formulate the perfect Google query to find the answers for Becca.  Can I change her diet?  Add a new therapy?  Improve her sleep?  Set up more supports? Unlock her learning style?  But every search ends up the same, with more questions than when I started and a growing sense that I am in so very far over my head.  Despite all my fancy education and training, Becca’s mom is no more help to her than any other mom who doesn’t know a phoneme from a phenom.  To be perfectly honest, I’d like to be that mom right about now.  I know just enough to be miserable, not enough to be useful.

I’m certain Rob will love that I’m sharing this story, but the feelings are very much the same:  Shortly after we married, while we were still on our honeymoon, I sat weeping in a cafe in Whitefish, Montana because I was a Gunn.  Not because I regretted marrying him (best decision ever, by the way) but because I felt like I was no longer who I had always been.  I couldn’t identify with my own name anymore.  It seemed like I was no longer part of my tribe and had been sent off to dwell with another.  I was homesick, in a way, but it wasn’t for my house back in Indiana, it was for my own identity.  That’s a little bit how it feels now.  I’m on the other side of the clinic door, sitting with my new tribe. 

I’m homesick for how things were, and how I still want them to be.