Ugh, when did this become so hard?  It’s not like me to have writer’s block or any kind of verbal “block” for that matter — and believe me I am sure that there are many people who wish that weren’t the case.  The whole point of this blog was to be totally honest and uncensored.  It’s not that I don’t have anything to say as much as I really don’t want to write the same blog post over and over again.

My life feels less like a roller coaster than a ferris wheel.  I guess I should be grateful for that — life is not a series of herky-jerky ups, downs, twists, and turns anymore.  But I really hate the ferris wheel.  Just being trapped in that little cage in a seemingly endless cycle of up and down…how many times have we gone around now?

It feels like every single aspect of life has become a question of “is the glass half-full, or half-empty?”  I’m tired of having to make that decision over and over and over again.  For once I’d just like the glass to be unambiguously full…or empty, I really don’t care — I just don’t want to always have to make some kind of conscious decision over with what attitude I am going to approach minutiae like the breakfast menu.

But this is how it is going to be, isn’t it?  I mean that’s the whole point of living in Holland right?  It’s not a vacation, it’s where we have landed and where we must stay.  And I get that it’s not an awful place, windmills and tulips, yada, yada, yada.  Except that that is a metaphor and this is real life and it wears on you.

I participated in my first, official speaker’s panel this past week as a parent of a child with special needs (and luckily for them I was much more chipper then than I am now).  Afterwards I listened to the facilitator of the panel talk to a guest about the “chronicity” of what we parents experience…the trauma, the grief, the guilt, etc…. Those things that never go away, but that we learn to cope with.  I guess I should maybe give myself a break, I’m only 18 months into my learning curve.

But I don’t know if it even matters.  No matter how much I understand intellectually that Hope is doing great that doesn’t stop me from just feeling awful when I see babies a fraction of her age who are more mobile, verbal, etc…  Knowing that she’s making “progress towards her goals” – be they gross or fine motor, doesn’t make me feel any more enthusiastic about going to OT or PT.  Knowing that one day she will talk, will walk, will….whatever — doesn’t make me feel like there is a light at the end of this tunnel.  In fact, most of the time when I think about the end of this tunnel I mainly just feel an overwhelming sense of dread.  Because once we get past this preliminary failure to thrive and assorted delays phase, then we get to move into the real deal PWS stuff….hardly anything I could be blamed for not looking forward to.

I’ve never had chronic anything.  It’s a different way of life let me tell you.  On the positive side, I feel a lot more empathy for that lovely couple in the herpes medicine commercial — that’s got to be a real bummer, dealing with those flare-ups for the rest of your life.  But that’s just the thing that pisses me off so much — I don’t have herpes, I have an sweet, adorable little girl and I just want to be able to enjoy that without the ferris wheel, without having to “learn to cope” with anything.  I’d like to just get past this, fix it and get over it.  I could do without the chronicity.

So anyways that’s why I don’t write much anymore.  Because it’s all the same crap rolling around in my head day after day and is about as interesting as commentating on a ferris wheel ride.  Aren’t I just a freakin’ ray of sunshine!

This entry was posted in Postcards from Holland, PWS and tagged . Bookmark the permalink.

7 Responses to Chronicity

  1. j says:

    Ferris wheel – captures it really very nicely. Maybe not sunshine but honestly partly cloudy creates much more interesting light.

  2. Vikki says:

    I wish that I had some sort of magic words to share but, of course, I don’t. I’m sending good thoughts and wishing cotton candy for you 🙂

  3. miji kim says:

    hey there. i hear you. sometimes i want to throw the glass away let alone trying to decide weather its half full or emty. i have twins 6 years old one with PWS and one typically developing (if that exists) and i just wanted to email you to encourage you. my girls,’ names are faith and hope. hope has pws. i am five years down the line and its hard it’s not easy. but keep at it. there is a reason why you are her mother. you were chosen hang in there.

  4. Jen says:

    I’m wishing you a chilli dog at the fair where the ferris wheel is- that’s what you really want- don’t tell me anything different!

  5. Jen says:

    BTW- that’s the wife’s response above- didn’t realize I was logged in as Jen.

  6. bretagne cowling says:

    Miss your keen insight and wit but understand all too well how quickly life can become overwhelming. Sending warm thoughts to you and yours.

  7. Angela says:

    Come back! We miss you and your little hope and grace!!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s