Thursday, May 19, 2011

Still recovering

Have you ever gone through surgery, and after that you'll have friends and family say that they wish you a smooth and quick recovery?  I know I have said that to people, because I do wish that for them. 

I'm not recovering from any surgery, not literally.  I'm recovering from more a figurative procedure, where the life I thought I would live was removed, and replaced with a life that I never, ever saw coming.

I think I am still recovering from that day back in 2004, when a voice on the end of my phone line told me that blood tests had confirmed the diagnosis of Prader-Willi Syndrome for our younger daughter.  I think I will be recovering from that moment for possibly the rest of my life.

I think my entire universe shifted that day, in that moment.  It only took a few seconds for that doctor's voice to say those words...but I will forever be feeling the ripple effect from that.  In the space of a few short weeks, from the time S arrived until that phone call, we went from being your average, garden-variety parents to being special-needs parents.  I am no longer the person I was, in the early days of that year.  I don't know who that old Jen is.  I'm not sure I would recognize her.  I know I would probably take issue with large chunks of that old Jen's personality.

But, at the same time, I am still "growing into" my new skin.  I'm still recovering from the loss of what I thought life with two children would be like.  I know, it's been 7 years - that is a long time!  But the first year of the PWS diagnosis is incredibly busy.  We quickly got involved with taking S to multiple doctors, seeing county service representatives, on and on.  We were simultaneously learning about the syndrome, trying to make sure S got enough calories and was growing, parent our older daughter, answer the many questions of friends and family...simply adjust.  It was mind-numbing.  Shortly after S turned a year old, I began to volunteer for the PWS organization in my state, and that has added a whole extra layer to our PWS journey - a very fulfilling but very time-consuming level.  We have planned four fundraisers.  I have been a mentor to other newly-diagnosed families.  Believe me, I wouldn't trade any of this!  I love doing all of this.  But I will admit, that it has been an extremely busy seven years.  There really has not been much time for "just living", just breathing, just adjusting to this life.

So it occurred to me today that just possibly, I am still recovering from that moment when the PWS reality entered our lives.  Maybe that is why some days I just feel numb, or like I could just sit for hours and hours and do nothing else, not even really think about much.  Because PWS throws something new at us on a very, very regular basis - which means that even as we are still wrapping our minds around PWS, we are also still having to recalibrate our family life.  S isn't finished throwing curveballs at us, because she still has quite a bit of developing to do, so the surprises and challenges will keep coming - without the hope that one day, she'll be fully independent and will be able to handle things on her own.  So here we are, with some parts of our future with PWS somewhat predictable...and the rest of it something we'll just have to keep recovering from.

Added on to all of that, is the process of parenting an 11-year-old who looks older every day.  She'll be a teenager soon.  She'll be wanting to date, sooner than I'm comfortable with.  Someday before I know it she'll be driving.  Oh, my. By the time AARP comes looking for me, I'll be positively catatonic.

Thanks for reading-


Unknown said...

Insightful, as always, Jen. Thanks for sharing!

L. Peters said...

Such a beautiful and soulful post, Jen. Living with PWS keeps me in a state of constant movement that I often forget to "feel" sometimes. Or perhaps, I choose to bury the emotions in an unhealthy way. Thank you Jen for helping me "feel" and seeing the beauty in mourning..if there is such a thing...and knowing I am not alone.