Category Archives: anxiety

acceptance, anxiety, Blindness, Childhood imagination, disability, family life, father daughter moment, father son moment, feeling different, inspiration, kids' imagination

Miracles Abound, But We Probably Miss Them

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If you need to be this close to the TV to see it, you just might be legally blind. K is, but if she is this close she enjoys watching races.
If you need to be this close to the TV to see it, you just might be legally blind. K is, but if she is this close she enjoys watching races.

Recently, my daughter was made fun of at school and began to feel awkward having a water bottle with her in class. “Dad, when will I be able to stop drinking water during class?  It’s bad enough I fart, but I feel them all looking at me when I drink.” The perils of second grade can be hell on emotional well being.

I told her to remember she is a miracle. She has lived through more than most of them ever will. She needs to remember she has lived through 4 or 5 (depending on how some exploration is counted) heart surgeries to deal with her pulmonary atresia, and she had a stroke. She has been sick enough to die multiple times. She has the scars to prove her courage and toughness.  What’s more, she has bowels which aren’t moving food like they should. So she has a choice, either take the chance given to her by multiple miracles and drink the water or let the stupid things thought by 2nd graders rob her of the life she is lucky enough to live.  I told her she is given a chance so many would love to have, but it’s her resilience which will make the rest of us look to her for inspiration.  Then I had to explain “resilience.”

The irony is I ask her to be tougher than I am all the time. I tell her she and her siblings are my miracle, keeping me alive. We called the school to make sure the teacher is aware what is going on and how dangerous it would be for somebody with her heart condition to become dehydrated. We are debating as she enters a new school after our move next fall whether to schedule a class with her new school to explain disabilities and hers in particular.

It is hard to mention people’s lack of ability to see what others go through without pictures of K.  Of course I find it hard to mention “not seeing” without pictures of her.  There is hard to define justice in the joy I take from “looking” at her looking at the world around her.  I wonder what and how much she sees.  Then I marvel at the speed she chooses to live with reckless abandon.

"OK I see a change in the ground. I don't know how far, but lets jump."
“OK I see a change in the ground. I don’t know how far, but lets jump.”

On a somewhat related but funny vein, O’s class must have had somebody mention Nazis.  He said he was thinking about them again when he heard about them in the Sound of Music.  Then on Saturday morning, he said, “Dad, I think I know why they were called ‘Nazi.’  I think they could not see the goodness in different people.”  I told him he can be very insightful at times, and I was glad for a morning of the thoughtful O (leaving out the “instead of the grumpy O who usually graces us in the morning”).

Cinco de Mayo, Boy Scout style.
Cinco de Mayo, Boy Scout style.
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anxiety, dogs, isolation, kimba, MS symptom progression, pet owner's duty

Unworthy

Is there a worse feeling than sentencing one who has loved you for a decade to exile or death?  When all she has had for me  is trust and love, when all she has ever known is our love, when all she has been is a constant companion for decade, is there a worse feeling than admitting she has to leave us because she is a pin head whose anxiety has gotten worse and worse for years till we  worry about her with kids.

For all the years of love and affection
For all the tears licked
For all of the fears eased

I don’t have words worthy of your affection, and I never have.

In truth, I’ve never felt less worthy.

I know why we have to do it, and I just have a hard time thinking of her face and the betrayal to come in just days.  As I start crying and just wanting to hide under the covers, I realize who will only be there in my dreams in 2 days after being there every day and night for 10 years.

It feels as though the tears will never stop.

Some of the tears are for her and my loss.  Some are thoughts wondering if this could be my fate.  Ten years ago, she was the object of our love as she escaped from the crate night after night with the help of our cat to go pee in the house somewhere. However, bells on the back door for her to ring every time she needed to go out worked.  Now we know some thing is wrong in her head as her anxiety increases, and we are left hoping for some bells to solve the problem as she goes to the vet tomorrow.  As this increase in anxiety happened, she more and more isolated herself upstairs. 

Over the past eight years, I’ve watched my MS and anxiety isolate me more and more. Who wants to hear about MS making life harder?  Who wants to hear about the frustrations?  I don’t know that I would want to say it all.  As I think about how quickly our relationship with Kimba has changed, I come to realize we are all just as vulnerable to random changes in our brains making us impossible to live with in the same home.  We’re all one step away from crazy, MS or no.  We can be as loyal and loving as anybody about whom stories have been told.  Tomorrow we may still be alone, and it may be for the best of all those whom we love. 

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