Monday, July 9, 2012

On Being a Lifeline

We floated the river this weekend as temps reached a scorching 91 degrees - which here in the high desert is HOT, HOT, HOT. As such we were joined by hundreds, honestly closer to a thousand or so of other like-minded, over-heated residents of this outdoor adventure community.

There were couples on air mattresses, grandmas in kayaks, rednecks soaking up skin cancer and lung cancer, SUP's a plenty and families on rafts roped to kids in tubes. The latter would include us: 1 large float tied to 2 smaller floats.

About halfway down the river, after being tugged on continually by my son and his rope, I looked at my husband and said ,"Just once in my life I’d like to float this river without having someone tied to me and constantly pulling me. I just want to relax and float free".

He laughed and replied," Ummm, sweetie, that's your life everyday isn't it."

An epiphany! Right there in the river surrounded by water, noise, sun and people.  Yes, that IS my life!

I am tied to my son.
There is no relaxing.  There is no free float.

Today on the float he hung on to my rope and wouldn't relax or let go for one moment. I did loose my cool with him after being tugged the wrong way one too many times: I threatened to untie the rope if he didn't stop.

And so it is in daily life.  He rarely let's me out of his sight without panicking. To go to school, yes. But for me to go on a date or overnight -- the rope just got jerked involuntarily out of his hand and he fights anyone or anything to regain control and reattach to me.

I realize that indeed he does need the rope attached to me for many safety reasons:  like having no judgment. None. Zero discernment. No ability to differentiate between a stranger and a friend. Not being able to learn from a mistake -- YES fire always burns, NO you cannot eat the dog food or drink from the toilet, NO you cannot walk in front of a speeding car or swing or bike.

I try so hard to be his lifeline and give him the security he needs.  But I do loose my cool.  There are days when I just want to yell at him, "what is wrong with you??? Argh!! Why can't you just cooperate for one afternoon? Is that really so much to ask?"


I know the answer even before the thought or words flow from my tongue.  I need to remind myself that he is developmentally 4 or 5 years younger than his chronological age. His disabilities are invisible, yet oh so very, very real!  He is so handsome, he looks so innocent and "normal". He has no outward signs of FASD. Sometimes I think I need to make him wear a t-shirt emblazoned with the message " Be patient with me I have FASD".

Even on long hot summer days it's good that God gave me such a patient and amazing husband to gently make me aware of the importance, the high calling of being a lifeline, the reality of being tied to someone who so desperately needs me to be there for him.

I think I'll go make a rope bracelet as a reminder.

5 comments:

  1. You're doing a great job. Hang in there. You're not alone.

    ReplyDelete
  2. Thanks Jill. By Gods grace, one moment at a time.

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  3. I'd like to invite you to Voices of Sensory Processing Disorder. This is a community website where bloggers can share their experiences, victories, tips and everyday sensory challenges with others. And we want you! We’d love to share your writing.

    Please visit us at www.voicesofsensoryprocessingdisorder.com to learn more. I do hope you'll join us. Happy blogging!
    Regards, Jennifer

    ReplyDelete
  4. I'd like to invite you to Voices of Sensory Processing Disorder. This is a community website where bloggers can share their experiences, victories, tips and everyday sensory challenges with others. And we want you! We’d love to share your writing.

    Please visit us at www.voicesofsensoryprocessingdisorder.com to learn more. I do hope you'll join us. Happy blogging!
    Regards, Jennifer

    ReplyDelete
  5. Thanks Jennifer. It would be a joy to encourage others via your blog!

    ReplyDelete