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Breathe. This Too Shall Pass. Just Breathe.

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10…. Breathe. Just breathe. This too shall pass. O is having one of his run from authority screaming in an effort to avoid any work or responsibility. I will play some of this off as his way of dealing with the stress of the move. I wish he wouldn’t teak K to jump on the couches and chairs or run down the stairs with hand prints on both walls as he steadies himself between each jump. Dear Lord, will he ever stop screaming that high pitched squeal of excitement.

9…. Breathe. This too shall pass. Just breathe. A will not always stay awake all night to be in a rotten mood. She will have to sleep at some point, right? Maybe…She explained her sleeplessness as feeling like the dogs in a thunderstorm. Even if she has never had anything bad happen while she slept, the fear is real, and it is inhibiting her sleep. Last week, we gave up and went to bed with her still up. At 3:30, she came and woke me to help her get in bed with her dog. She had stayed up drawing by flash light.

8… Breathe. Just breathe. This too shall pass. K is a bright cheerful light. She laughs as wind touches her face. She cheerfully accepts any thing she can. She imitates her siblings to our chagrin and emulates O’s hyper activity intent to out screech him. She wants to miss nothing in life, and she wants to be with her siblings at all times even as they teach her things they get in trouble for doing.

7 …. Breathe. This too shall pass. Just breathe. My staff of 7 from a year ago has lost 4 of the employees and is likely to lose another. Out new upper management change has driven many of the best employees to look elsewhere for employment. All the while we enter the 5th year of our 5 year cycle. The most complex processing lies directly in front of us with little time to train new employees and not enough employees to do the job without the added brain power. Miss deadlines? I hate failing to deliver.

6… Breathe. Just breathe. This too shall pass. We bought a house! We have our stuff in the new house if now put away. I feel like I live in my car going between Walmart and Lowes to get this and that followed by returning this and that to correct the sizes.

5… Breathe. This too shall pass. Just breathe. With stress comes pain in the head and muscles, foggy brain time, and ever more mistakes. The amount of rework time needed is insane.

4… Breathe. Just breathe. This too shall pass. A’s has slow motility. I wonder if she knows what it is to have an empty stomach. We have tried medicines aplenty. We are having some luck with juicing, but it is an abominably labor in tense process for us to get juice pulp free using a food processor and a strainer to get juice which will go through her g-tube. This too shall pass? That’s the idea!

3… Breathe. This too shall pass. Just breathe. My heroine, J, has done so much of the move. She has coordinated, planned, carried and strained. I have always called her my Wonder Woman. How she keeps going is incredible. I feel so guilty unable to help more. Sure, I can watch the kids and carry the really heavy items, but I haven’t the energy to go 14 hours a day as she has for the past few weeks.

2… Breath. Just breathe. This too shall pass. One of the hardest parts of MS is the helpless feeling I should be able to do more. As I get stressed, I still expect my mind and body to perform as normal. I have had varying levels of pain for year, so why should it matter now? I have been a project manager for 8 years. Work stress comes and goes, so why am I unable to perform as well as ever. Then, the fear of failing again feeds into a feeling of downward spiral. Why? It’s a matter of faith this too shall pass, and recovery is near.

1… Breathe. This too shall pass. Just breathe. We have tried for years to teach our kids the magic calming of counting either up or down with each breath. I find myself resorting to this method ever more often. Calm is out of sight but just around the corner, right?

Happy Thanksgiving!

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Childhood imagination, Family, family life, funny kid's story, hiding symptoms, innovation, life with MS, memory, MS, MS cognitive function, MS progression, MS symptoms

I Got Your Crazy Right Here!

If you want crazy, I can do crazy!
If you want crazy, I can do crazy!

At camp this week, O celebrated “Crazy Hair Day.” When it comes to crazy, it’s a house specialty, and we wouldn’t have it any other way.

It was an excuse to take advantage of O’s naturally flamboyant, impulsive nature.  It some ways, it was like asking a cat to sit in the sun.  With O, his impulsive side frequently gets him into trouble,but days like today are our rewards for dealing with the negative consequences of impulsive behavior.  We all get to smile and appreciate the joyful abandon with which he can throw himself into a project.  It is one of his traits I think we need to cultivate as much as possible because it will let him do things as an adult nobody else even considers.  Free thinkers move society in ways those of us stuck in our mindsets will never anticipate and frequently only appreciate in hindsight.

As for me, my crazy was a bit different this week.  I went to a block party to say goodbye for some of our neighbors with whom we have been friends for years.  The crazy part was my inability to remember anyone’s name outside of my family.  Now I have spent minutes remembering my wife’s name, but I have never drawn so complete a blank on so many names with whom we have hung out for years.  I couldn’t even remember their kids names as they played with A, O, and K in the cul-de-sac.  I guess I am lucky I have so much practice dealing with people who know me whose name I do not know.  Years of being an R.A. in college came in handy once more.  Of course, years as the dad of A, O, and K have the same effect.  Their behaviors and stories are frequently a topic of discussion with other parents and bystanders who know us or of us.

Still, I hope this recent memory lapse is the result of stress and pain rather than another flare.  The experience was rather disconcerting, but I do not think anyone else noticed.  I have been lucky for most of the past five years in terms of MS progression.  Reluctantly, I am scheduling a titer count, a test to see the risks for continuing to use Tysabri. I have put it off long enough.  I know the test will say nothing of whether I am having a flare, but it will give me a better sense of the risks I face continuing to use Tysabri.

All in all, it is just another “crazy” week, but it is one with a lasting image to make us smile.

Here’s to the exuberance of youth!  May we all hold it for as long as we can.

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