Saturday, September 7, 2013

Losing "normal"...again

When my younger daughter was diagnosed with a complex, frustrating genetic syndrome shortly after she was born, part of the adjustment process was accepting that her life would probably not follow what most of us would consider a "normal" path.  Because of the demands that the syndrome would place on her, and those caring for her, those "normal" things that most of us take for granted - "typical" experiences in school, participation in childhood activities, relationships with other kids, expectations of further education/full-time job/marriage/kids - might be extremely difficult, if not impossible, for Sophie.

So, okay.  I've never been someone who felt that the only way to be happy and live a good/fulfilling life was to do the "typical" stuff (even though my own life looks pretty typical).  So Sophie will still have a the best life we can manage for her, without making lots of dire predictions.  Okay.

Well, it is September of 2013, and guess what?  I find myself once again having to accept the loss of "normal" - not in relation to my younger child, but this time with my older daughter, K.  She's 14 now.  She has been experiencing severe anxiety since earlier this year. We are trying a combination of medication and counseling for her.  It is a process, and it takes time.

She is supposed to be a freshman in high school.  I say "supposed to be", because she has only been in school for a full day one time - the first day, Aug 21 - because being there for the full day is not possible yet for her.

There are several experiences going on, here. There is her experience, of course; she is fully aware of and concerned about how much school she is missing.  She misses her friends.  There is an orchestra trip to FL that's happening over the holiday bread in December; I'm sure she is aware, as am I, that if she doesn't start to feel substantially better and get through complete days and weeks of school, she won't be able to go on this trip.  She knows this is not a great way to start out a school year.  So having those realities running through her head probably isn't too helpful - more stuff to be anxious about, on top of what she already has.

Then there is my experience, as her mother.  I never thought of myself as a high-pressure parent.  I'm not a parent who is stuck on having her kids make straight A's, go to some high-falutin' university, and conquer the world.  At this point, though, I am having to once again reconfigure even the "normal" that I had assumed was possible, obtainable, expected for my typical, no-diagnosis-necessary (I thought) older daughter.  She wants to do things with her friends - but at the moment and for the foreseeable future, she finds it daunting to even leave the house, which means that all those fun activities kids her age do - going up to the mall, going to the football game, going to Homecoming in a few weeks....may not happen, because of this anxiety.  She spent the summer, for the most part, in her room.  I would have taken her and friends to the mall, to the beach - but that would have meant leaving the house.

I feel like I have gone from having one special-needs-child with an adjusted future, to now having two kids who are having to deal with diagnoses that take them down some different paths.  Some "not typical paths".  And you know what?  Even though I have been through this once before, this process of having to reconfigure what "normal" would look like - this STILL SUCKS.  It just does.  I am already tired of watching everyone else's typical kids freely do things that Sophie finds impossible.  And now, with K, there is once again the absolute heartache of wondering what her high school years will be like and if there will be the same measure of good things in these years as there is for other kids.   I just would like those years to be, well, "normal".  I am still hoping for the best, I still know that treating this anxiety will take time, I know I must be patient, I know that what happens for her in the first few months of high school doesn't necessarily set the pattern for the whole four years - but, I still HATE this.  I hate this for her.  It still sucks, and it's not fair, and I hate that my kids have to struggle just to do the things that other kids seem to effortlessly do.


Joy Capps said...

My experience is a bit different as we knew when we were blessed with our son at 4 months old that he had PWS. Still, as you know, NOTHING about PWS is simple or normal. He is almost 14 and I think I have almost come to grips with the fact that it is what it is. ;) The negative and the many positives. Yet, like you, I figured things with my typically developing daughter would be "normal". She is 12 but has always had issues with anxiety...she takes after her mama. No advice but I do understand.

JMB said...

Joy - thank you - for reading this, for commenting, and for understanding.