it isn’t pretty, but it’s real

10986616_10155194547425693_248065363001249608_n

WARNING: don’t read this if you are not interested in truth.

It isn’t pretty, but it’s real.

Remember Jack Nicholson in “A Few Good Men”? : You want the truth? You can’t handle the truth!

Much of our truth is kept inside the walls of our home. This is not due to shame. I think maybe the biggest reason is because it is too heart-wrenching to relive through the telling. An episode is an exhausting event, once it is over I do best to walk away and leave it behind. Perhaps another reason I have not spilled about this is because I don’t give you all enough credit Unlike Jack Nicholson’s character I should know that because you love us…. you CAN handle the truth.

People with Prader-Willi Syndrome have some behavioral challenges that are compounded by the hunger, but also have their own impact on one’s ability to function well during a day. Examples of non-food related behaviors can be found in brochures, articles, and websites. Here is a compacted list of some behaviors of PWS you might not know about:

  • difficulty with change in routine- insistence on routines
  • temper tantrums
  • obsessive and compulsive behaviors
  • mood fluctuations- mood lability
  • ritualistic behaviors such as hoarding, ordering and arranging objects
  • repetitive speech
  • depression
  • psychosis

At our house I simply consider it a “meltdown” or “issue” to be de-escalated and lived through. Almost every morning, the first thing I wake up to is one of these “issues”. I hear the grumbling, shouting, crying, and stomping; my first thought is always, “ugghhhh, can’t I just sleep a little longer?” My second thought is, “Poor Katie-Did… what has put her over the edge this time?” It is often because she can’t find something immediately, so she takes a gigantic- off a cliff type of leap to….”it is gone, it will never be seen again!!” When in actuality the item is 4 inches away from where she expected it to be and might have something in front of it or on top of it. Not quite a catastrophe worthy of the tears and angst exhibited. Unfortunately, the calming down phase does not proceed with the same rapidity as the panic/meltdown phase. A calm, soothing voice (as opposed to me grousing, “for Pete’s sake, what on earth is wrong now? Have you looked where you think it should be?”), some slow, deep breaths, and a few minutes alone can turn her around….oh, and turn me around, too! The disruption caused by these meltdowns has become expected- which is to say that it no longer sends me to my room to lean sobbing against the closed door. I now can continue to the bathroom to pee and brush my teeth.

There are still times that completely break my heart because the cause of the meltdown is something that has truly touched her and is not a seemingly trivial reason for panic. One morning her crying showed no sign of irrationality, it was pure sorrow I witnessed and tried to console. She was unable to speak, but held up broken chunks of a coffee cup. The cup had photographs of her dear nieces and nephew on it and had been a treasured gift from them. She clutched those shards to her chest and gulped for air as I wrapped my arms around her and my tears fell on her blonde curls.

There are things in her life that interest her that are not food.

She loves from a deep heart.

That is pretty. That is real.

Advertisements

10 thoughts on “it isn’t pretty, but it’s real

  1. 💗 We love Katie because she is Katie……kind, generous, persistent, caring, questioning, answering, smiling, and most of all ~ loving! That’s the sweet Katie we all know and love! I am looking forward to hanging out with you two this summer!

    Liked by 1 person

  2. Your blog tonite was as real as it gets my friend. You brought tears to my eyes…and if you wrote with yours dry, I would be surprised. A friend once told me that the key to a good life is to “love for all you’re worth”. So happy to see so clearly that you are both doing just that!! Hugs to you both!

    Liked by 1 person

  3. I had no idea of the angst Katie lived with and the trials you and your family lived with. As parents of special needs kids many do not know our stories. I enjoyed each and every treasured moment with and with you and Gary. I love you my friend and thank you for sharing Kati with us! Love you!

    Liked by 1 person

    • awww, I wish I knew who was making such a sweet comment, Coach, is this you? I think it is okay to share our stories, when I was younger I didn’t want to sound like I was complaining…so I didn’t, but now I think it helps others to have some understanding and not all truth is complaining it is just telling it like it is.

      Like

I would love to hear from you. Please leave a comment here.

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

WordPress.com Logo

You are commenting using your WordPress.com 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 )

Google+ photo

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

Connecting to %s