Category Archives: symptoms

parenting, perspective, raising kids, stress, symptoms, teaching kids how to think, thought patterns, Uncategorized

Who Sees Clearly?

What you may see depends on which side of the window you stand.
What you may see depends on which side of the window you stand.

I wonder who sees most clearly, the one looking out through the partially drawn curtains or the one who looks in from outside? Both may think they see enough to ascertain what lies on the other side of the window pane. However, light may hide what is less well lit on the other side, and the curtains themselves may act as blinders potentially focusing our attention on but a part of the reality on the other side of the window pane.

I think about this as we struggle to get A up every morning. I guess I am thankful she is finally sleeping again, but getting through the morning routine of bathroom, medicine, food and teeth brushing is becoming an ever more arduous and time consuming endeavor. Do we wake earlier or put to bed earlier? Are the medicines to blame? Is this a normal reaction to a stressed body and mind?

Clearly there is something happening on the other side of the pane leading to what seems like ever increasing levels of frustration and pain. What is one to do when your child implicitly expects you to provide the framework for them to understand and overcome such trivialities in life as getting up to face the day?

Perhaps the totality of experience is too great to be viewed through any window as neither side of the window is gifted with a complete picture. Imagine two kids looking through the from opposite sides of the window in the darkened bedroom. The kid looking out may see a child running and screaming. Are they scared or happy? Should we call for help? Oh no! To the child running outside chasing a ball too low to be seen by the person inside, there is no need to stop and ring the bell because the room is dark with no sign of anyone with whom to play. Both perspectives miss, and an opportunity is lost.

While I may read about slow motility and pulmonary atresia, I can no more more understand the breadth of experiencing them than I can explain the sound of wind blowing through the trees full of leaves to a blind man who has never heard a sound. Most of the time, I feel trapped with a sense of what is going on which feels no more complete than either of the two kids on opposite sides of the window.

See what happens when I hang curtains? I pretend to be a kid once more to try a perspective I worry about losing.

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Animaniacs, foster care, Multiple Sclerosis, psychological impact of adoption, symptoms, understanding MS symptoms, word search

When Words Fail

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One of the most frustrating changes in my personality brought on by MS has been my frustration with my lack of confidence in dealing with emotionally charged situations in conversation.  For years, I know I’ve frustrated my wife by staying quiet in arguments saying only I need more timing to get the words for my emotions correct.  I’ve long played wheel of fortune trying to get the words in my head out of my mouth.  Heck, I’ve spent 5 minutes trying to get my wife’s name out in a conversation at work.  When this is added to a pressure for an immediate response, the wrong words come out.  Knowing this going in to situations, I’ve come to trust written modes of conversations more.
I ran across a situation this week where this lack of desire to speak to a problem ran afoul of a time ripe for misunderstanding.  In trying to explain why a date was no good for my family, I pissed off my mom.  I don’t begrudge her anger and frustration at us being unable to come on a particular day.  To make matters worse, in hearing her frustration, it became clear how little of the impact of my MS is projected in other matters.  
How can I project out how difficult it is for me to take care of my kids by myself at home, much less on the road?  I can tell people how J buttons my shirts so I can get to work on time.  I can tell people I feel more pain.  I can even make the point I keep massive numbers of dates and tasks on a calendars at work, but I trust J to make and keep our home schedule because my mind simply can’t track that much any more.  Ultimately though, I can’t convey how much I have to rely on J.  This weekend with J having the flu and K sick has certainly brought this need in view.  With all my mistakes, I have an Animaniacs’ quote stuck in my head, “Eeee Gad Brain.  What did you do that for?” Pinky and the Brain  Naturally my brain is stuck in the role of Pinky.
For a while I wished people close to me could understand what having my MS is like. Then I realized the only way they could would be to live it, and why would I wish this upon those about whom I care? No, the only people I might wish this upon are people for whom I don’t care. If I really don’t care about them, why bother to wish ill for them?
No, I’ve come back to the ultimately I am as alone in my experiences as I am in my dreams. Sometimes I am lucky enough to find someone to share parts, and these parts are the better for having been shared. What more could I really want?
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On the fostering front, I was at a presentation this weekend talking about how adopted children always come back to wanting to know more about their biological family.  The timing was remarkable when I got home and A was talking about sitting in traffic with K, and her sister.  When I asked her about her “sister” and who she was, A was very no committal, almost as if she was scared to talk about her.  I asked if she was nice to K too like she was, and A was quick to grab at the olive branch, and she beamed when I said “She probably gets the caring from you.”
A week after talking about O’s alien parents, the point of the talk about how their origins always being in our kids’ minds seemed spot on target. 
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