Category Archives: parenting

Exposure Solves Many Fears

I went to the MS Walk down on the Mall in D.C. this past weekend.  My wife and I had debated me taking our kids for the walk.  I want them to see others with MS if only to counter any fear they may get when they see me have trouble with it.  Ours is a medical family with everyone having their issues.  To a large extent, the best counter for fear is exposure.
For example, when I started my MS treatments, I had a shot a day of Copaxone.  I tried to make sure and do the shots in front of my daughter because as a heart patient who was going to need fairly major heart surgery, I knew her future would include many a needle.  For that matter, exposure helps remove fear and apprehension of many a scary or distasteful part of life.  I’ve had it noted my kids take medications by mouth better than just about anyone’s kids.  Of course they do.  they have been taking them their whole life.  Heck, my biggest problem with getting my daughter to take her nasty tasting meds with her filled syringes is her desire to take them new ways. This weekend, she took them not using her hands and just sucking them up, she took them by standing them up on the table and covering the exit point in her mouth and pushing down on the table to push in the plunger, and she tried to take more than one at a time.  The last is the only one I discouraged because she has tried this in the past with a little chin dribble as the result.  Now tell me most kids would have fun taking their meds like this.
ke them with me, but ultimately, we decided to wait until next year to take them.  There was little notice because I didn’t realize the walk was this weekend till Thursday, and K had an appointment with the MD School for the Blind which the kids also wanted to attend.  Their love for her is commendable.  In addition, it would have meant waking early and the dealing with some anxieties while tired.  We had some fear of “Daddy, you’re not going to end up like him/her are you?  Oh NO.  We have to do something!”  While medications for extreme anxiety are being altered to get a stable state of mind, we weren’t sure what the end result would be.  So we postponed for one year.  Still, I went.
I liked the walk, and I had a great time talking to other walkers about their MS or about the people for whom they were walking.  I also got some information on a non-steroid treatment for flares which I would like.  I almost feel like turning in my man-card every time I find myself crying at something like “Independence Day” with Will Smith.  It’s a comedy darn it!
All in all, it’s been a pretty fine week, even if kids refuse to sleep most nights.

My favorite quote of the week was “Courage is standing alone on the edge of a cliff and being OK with being alone.”

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Home at Last with Family Whole

The last stanza of Tennyson’s “Ulysses” sums it up:
 

“Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are–
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find and not to yield.”

A week of nights squared, just one day short of 50 days in the hospital, is how long K spent at Hopkins.  My wife, J, was there all save the 4 days (the four during our long planned trip to Disney when she called constantly for updates and arrangement of care).  Through the 49 days, the kids made do with my time and attention for many an afternoon and evening.  I can’t say it was all fun and easy, but there came a point when I kept saying “we, as a family have invested so much, how can we walk away?”  Nobody ever promised us a rose garden.  Our kids, at this age, seem to know only care vs. don’t care, and the thought of walking away isn’t one I can see them considering.  They were disappointed with every set back.  They wanted K and J back home. 
 
“Maybe she will get out tomorrow or in just a couple of days.” became the mantra for all even when it was harder to believe.
 
Still through it all, I think there was a wear down of body and emotion, but not of will.  I could see it in J, and I felt it in me.  As for the kids, I don’t know that they could recognize it.  Their behavior after every visit spoke to the emotional costs though.  Those were some difficult evenings, but through it all they came out seeing her again and taking pride in being with her and making her smile. They take pride in their bonds with her, their little sister.
 
In the end, it seems our resilience emerges tougher.  Do it all again?  I don’t know if the same decisions would be made knowing all of the end costs, but I also can’t think of a single spot where hindsight would lead me to a different pick.  I’ve always been stubborn, and yielding on such things seems unnatural.  I say all of this not 24 hours after her return home with my MS fatigued self having a cold and J being run down.  The first steps of any journey may be the hardest, but heck if the last ones aren’t the most draining as the push towards the goal is realized. 
 
What’s left? 
 
Just us
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