Wednesday, March 28, 2012

Round Hole, Square Peg, Squiggly Lines

Do you remember that feeling from middle school when you just weren't sure where you fit?  Or was that just me?  I've experienced that same feeling many times over the course of the years, but never more so than I have as a parent.

In the past, I've been very open about the fact that it took us a long time and a lot of doctors to have our babies.  Infertility is a wild, crazy, emotional roller coaster and for all the people that watched me go on that ride, can I just blame it on the hormones?  I was crazy, irrational, and more than anything, just felt like I didn't fit in.  Fortunately for me, I found a wonderful support system that made the journey easier and even better, I have two children to show for it.  Still, it felt strange being so different from everyone else.

S arrived 5 weeks early by emergency c-section.  No, I was not prepared for that.  In fact, I wasn't prepared for much.  I was smugly thinking that I would have my baby sometime around my due date and that I still had plenty of time, just like every other person I know.  Whoops!  S needed serious care and was transported across town to the Neonatal Intensive Care Unit.  She was there for 18 days.  It was an odd feeling.  We would go there every day, more than once, to be with her.  Here was our 35 week baby next to a bunch of 26, 27, 28 week babies.  She didn't really look like a preemie, especially after she was untethered from IVs and the ventilator.  Still, we were a family experiencing life with a sick newborn, just like everyone else.  We were going home every day to an empty crib, an empty rocking chair, our empty arms.   Except it felt different.  It was almost like she wasn't "sick enough" to make us one of the crowd. We were invited to the NICU reunion later the following year and when we went, it felt very much like we didn't belong. No one knew us, not even the nurses or doctors.  Our 18 days felt insignificant in that crowd, although for us, it was monumental.  It was so strange because we really did experience many of the same things that every other family attending had experienced, but it wasn't "enough."  We never went back.

With K, we have had many conversations over the years with each other and professionals about how she just doesn't fit in any "box."  When she was in preschool, there was much discussion about whether or not she was autistic.  Our journey to proper diagnoses has been more like a process of elimination.  She's not autistic, she's not dyslexic, she's not ADHD, she's not apraxic, she doesn't have an articulation problem.  This goes on and on.  It is a constant challenge for us and for the school because there's no way to make a good prediction of her anticipated progress.  Often, kids with a clear diagnosis - autism, dyslexia, sensory processing disorder, apraxia, speech articulation - are helped by a fairly consistent toolbox.  Reach in, pull something out and it will likely be beneficial to the child. Certainly, every child is unique and may need a unique set of tools, but with a clear diagnosis, there is at least a place to start.  K doesn't fit the profiles very well.  She is, in her own extra-special way, a square peg trying to fit in the round hole.  To help her often means that the best we can do is just keep throwing things her way, hoping something will stick.

As K's parent, I find myself trying to follow these strange squiggly lines.  I want - need - to connect with other parents experiencing what I experience.  When I think I have found something, I often look around and notice that while K most certainly is extra-special, we don't have nearly the same kinds of challenges that so many other families with extra-special kids are facing.  She's not quite "impaired enough" compared to so many others.  I still need the support, but just as I did in the NICU with S, I'm not sure I belong with these other parents who are struggling with so much more than I am. I am the one they will look at and think, "What are you complaining about?  Try having an kid who is (fill in the blank with multiple diagnoses)!"  I don't diminish their frustration; I believe it must be grueling to try and successfully parent a child with that many issues.  On the other hand, I'm facing the same emotions, the same fears, the same frustrations, but I just don't quite fit in.  I find myself being quiet about K's actual diagnosis.  If letting someone think that my situation is more similar to theirs provides both of us the support we need, then so be it.

I am very grateful that my situation has never been "enough."  I appreciate and have so much sympathy for the more severe situations many parents face.  I am happy with my round hole, square peg, squiggly line life.  I wouldn't want it any other way.

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