Category Archives: MS fatigue

Christmas, expectations, kids' imagination, kids' perspective, life with MS, MS, MS fatigue, stress and MS

Rush of Expectations

The hardest part of the holidays is dealing with the perception of there being more which can be expected.  From the time we are children, we look forward to the holidays.  We expect our family to give a little extra.  No matter how much comes our way on a normal basis, we expect more.  In a lot of ways, I think this is the cruelest part of the holidays, that we should be so set up.

As parents, we try ever harder to come up with the perfect gifts for our kids to preserve their enjoyment and create a base of good memories to associate with time spent with family.  Sometimes, the wishes just become laughably extreme.

“A, how exactly do you expect Santa to get the BMW mini under the tree?”

“Well, you told us the story of Jimmy and Jen wanting horses.”   http://thelifewelllived.net/2011/10/07/positives-from-negatives-and-a-christmas-story-2/

Lest one think this is a problem only for kids, I have to admit I too fall victim to expectations game.  With more time off from work coming, I expect to feel better with more rest.  I should know better.  This is not how the game of life is played.  More time off work is more time in a loud home surrounded by excited happy kids, more time trying to meet expectations of family, more time thinking about deadlines I cannot meet at work, more time spent trying…  While holidays mean more of a lot of things, it is rarely more rest.

The problem comes when I try to live everyday doing as much as I can.  By the time the holidays come, I feel like I should do “more,” but there simply is no more.  If there is a change, there is less not more.  Anyone who has had MS for as long as I should know expectations are a fool’s game.  Still, my wish list for the past few Christmases and birthdays remains the same.  My wish list has remained virtually unchanged for longer than I have had MS.

On the funny “For once, I didn’t do it” list for this Christmas is our Christmas card.  Walmart’s card ordering web page is not very clear when it asks for names of family members in the cards.  So when J ordered the cards, she missed the field.  As a result, we got cards with all the right pictures and words until the names part.  I have no idea who Nick, Tami, Emily and Cole are, but I know the card doesn’t have their pictures on it.  We have 50 that match this post’s image, and we are thinking of sending them to people in an effort to find out just how many of us actually read the Christmas cards.  To Walmart’s credit, they replaced the cards for free with our correct information.  It is nice to see some good customer service.
Chistmas card 2013

Share
decision to take in a foster child, kids' self definition, MS fatigue, parenting, Tennyson, Ulysses

Home at Last with Family Whole

1 Comment

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
Share