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a good life, break point, family life, MS, MS cognitive function, MS symptoms, pain, parenting, self esteem, stress, Uncategorized, when kids won't sleep, worries

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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Family, family impact of MS or other trauma, family life, family time, fatigue, happy life, raising kids, Uncategorized, worries

The Universally Ordinary Existence

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As my wife and I bought a house, or rather a spot of earth and a promise to build our house, I could not help thinking how ordinary our life is.  We have children who have gone through so much, but still much of their childhood is the same as every other kids.  We may not do everything on the same time line as other families, but I believe we have as much joy and love.  In the end, when I think about what my wife and I do for our children, I think maybe that is what it’s all about, giving them a chance for a life of chances to learn, feel and fail like everyone else.

With all the trials of healthcare our family deals, most of living is still dealing with the mundane.  Taxes are done, the house is chosen, and we can continue the everyday task of learning a little more than we knew yesterday.  The chess peaces are in place, and now we can continue to learn the beautiful game of chess as I try to teach my kids the way my grandpa taught me.  It is just like life.  We start by learning how the little things work, learning the strength of the pawns.  There is plenty of time to learn the importance of moving the less ordinary peaces so they can take advantage of opportunity and protect all the smaller parts of our lives.

Backyard Swings 2014
Backyard Swings 2014

Our kids have the same fears of moving so many other kids have.  It will mean a new school and some new neighbors.  It will mean leaving the backyard they love with a swing set they have played on for hours at a time.  Fears and anxieties of moving abound, and unfortunately they will remain until after our move, hopefully in September.  I hope that they will realize many of their pawns are the same pawns, and the new ones move just like the old.

K seems to have taken the whole moving idea to heart. She is even into rearranging doctor's offices while she waits.
K seems to have taken the whole moving idea to heart. She is even into rearranging doctor’s offices while she waits.

Some days and weeks are just ordinary from the anxiety of doing the taxes to the frustrations of trying to get children to sleep through the night.  I am told there are children who sleep, and it is the midnight wakeful moments that are the exceptions for them.  Still, as we struggle through deprived weeks, I tell myself each bleary-eyed morning, “There are millions of families who wish they got your sleep or could stop their morning for a second coffee to keep them alert.  This tired feeling is normal, even down right ‘ordinary.’“  So what if coffee and soda are more than mere pawns in my defense? 

Some times, I have to remind myself, the strongest part of the family life is not built upon dealing with the extraordinary.  Life is made up of the everyday doings from walking the dogs to reading with our kids.  Every now and then, somebody asks me, “Isn’t it hard to take care of medically fragile children?”  When they do, I tell the truth.  The hardest parts of raising our kids have nothing to do with their medical issues.  The hardest parts are the same for every parent to whom I have talked.   Much like in chess a good defense is made mostly from the pawns, the good family life seems to be made with the every day deeds, overcoming the every day, ordinary challenges…like learning how to change a diaper.

Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
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