Category Archives: family impact of MS or other trauma

Child care, children's therapy, chronic conditions, chronically ill children, family impact of MS or other trauma, family life, Uncategorized

Disability

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What, you mean that doesn’t look like a comfy sleeping position?

Disability is relative and not a  good determinant for value.

Our family recently found ourselves in need of a new dog to be a companion to the hyper one we already had.  With our family’s make up of various medical conditions, we got excited when J saw pets with disabilities.  When we  realized they were close to it, J started combing through their dogs looking for an ideal match.  We all piled in the van and headed off to meet a one-eyed dog in need of a home.  However, the one-eyed dog was intimidated by our loud and crazy 4 kids and hyper dog.  It wasn’t going to work…but thankfully the lady who runs the place thought of another of their dogs who might match.

Ziggy had his back legs/hip hurt when he was younger, but he is such a bundle of happiness.  He loves everything and everyone.  He trots after our hyper dog or plays stationary defense when he gets tired.  He lets our two-year old lead him around.  The biggest “disability” he seems to suffer is an inability to jump.  When I talked about him to my coworker, she said, “That’s a disability? I wish my dog had that disability.”  I figure his making the most of life without being able to do something other dogs take for granted just means he belongs with us.

Last week, I had a conversation with my son about MS in my life.

O: “Do you ever wished you didn’t have MS?”

Me: “I used to wish that I didn’t have MS, but over time I have come to accept it as just a part of the hand I was dealt.  I realized getting angry about the head aches, lack of dexterity, poor memory, etc. was not really helping me.  In fact the more I focused on it, the worse I felt.  In truth, I think I hit the lottery when it comes to the hand I have been dealt to live.  I grew up with parents who cared about me.  I’ve always had enough to eat and opportunity to learn.  Now I have a beautiful wife, four kids, a good home and some dogs to keep us company.”

O: “The headaches and stuff suck though.  I wish you didn’t have it.”

Me: “At this point I think wishing things like that is about as useful as wishing I had been born with the talent to be an NFL star making millions of dollars.  Wishing to be other than I am seems to belittle so much of what I am and can do.  I am probably not going to gain fame from my singing unless you can figure out how to make me famous for how poorly I sing and dance.  My bet is you will not grow to be the tallest man in a generation.  I think there are still a ton of things you can do with your life.  Should I waste time wishing you were a giant or just appreciate you for the smart, athletic and empathetic kid that you are?”

O: “I guess that makes sense.  It’s your whole thankful for what we have bit again isn’t it?”

Me: “Yup.  Our family all came together bonded by our ability to live with medical conditions.  I can not wish too hard for us never to have had our conditions.  Without them, we might never have met, much less become a family.”

 

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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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