Category Archives: MS

family impact, fostering and adoption family impact, good life, inspiration, MS, Multiple Sclerosis

Seek and Ye Shall Find


If you are looking for ways my MS impacts me and us, I am sure you will find them.  It is not hard.  Much as I may wish them to at times, they refuse to hide.  When flustered, I can not recognize what’s in front of me, like the pacifier under the pillow where I looked 3 times (and where I found it 5 min after putting O to bed)…If you are looking for things to be wrong, you will find them as easily as when you note I am constantly rubbing my wrists as if I could magically rub away the discomfort.  I promise. However, I think this is true for all of us in all walks of life.  If we look for the ways reality is less than perfect, we will never stop finding that for which we search. 
If you are looking for the “old me,” I am here too.  If you look for me, I am still here loving as much as ever and trying everything in my power to find new ways to improve.  I am still up cleaning or working on tasks around the house at my slow pace until close to 11 two of most every three nights.  It is a slow distracted pace after nine, but in my defense, I have been up since five.  I am still going to spend free time trying to do activities for our family whether it is writing this so I can stay sane or searching for vacation rentals because we as a family are important to me.  I am still here.
When you tell me to recognize my MS is causing problems, it leaves me incredibly frustrated.  You seriously have not seen me say exactly this?  It feels like I soiled myself, and you want to rub my nose in it as public shaming.  When people who could be helping suggest my MS is a reason not to care for K, it feels like I am drowning looking for peace, and all you have to offer is a bucket of chaotic water to dump over my head.  Yes, there are times I need support, and maybe it is more because of MS.  Who takes on mammoth tasks like raising our kids does not?
If your looks towards me are filled with contempt or pity at us for attempting a task that seems Herculean at times, you will come to see in my face a mirror.  Likewise, if you look towards me with love and wishes to help, you will see it and gratitude reflected back at you magnified with all that I am capable.  If you are sad or mad because I am not the same person I was ten years ago or more, I cry for you and your expectations.  Neither of us is nor can be.  Nor should we try.  The idea by which I try to live is not to hold static that which we once were.  To do so is to deny all growth, and I am not yet done growing.
I have MS, and to this point, it puts quite a few temporary limitations on me.  However, there are only a few things I used to be capable of doing that I cannot do with calming balm of time, whether it is button my shirt, learn to run again or even learn to think differently. 
Sincerely,
An Attempt at Living with MS
 A note about A: For the past week she has been subject to teasing on the playground because she keeps trying the monkey bars and taking forever.  Kids push her out of the way, and even mock her as she tries, falls and tries again.  It might be easy to ask why she insists on continuing to try, and the answer goes back a few weeks to when she tried them and fell.  She fell on her back and had the wind knocked out of her.  Since then, she is determined to make it across.  Much like when she struggled with arithmetic and worked at our dry erase board for  weeks A’s math issue I suspect the monkey bars will fall to her determination like everything else has.  She may have a harder time picking up some new skills than others, but my money is on her when it comes to somebody maximizing their potential through hard work and force of will.  
She inspires me to try to live up to her.  If it seems backwards for a parent child relationship, so be it.
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forts, kids' imagination, kids' perspective, memorial day, MS, pig roast, raising kids, three little pigs

The Forts We Build


We all have forts in which we live.  Some of us have more than one, and some have forts within forts, an inner sanctum where we can go for refuge while our outside façade maintains the appearance of normal.  In our modern lives where many of us separate work from home lives, we are almost required to have and maintain more than one.  How many of us act the same around loved ones as we do when they are not around?
As kids, most of us are told the story of the three little pigs where the pigs each set to make their own home, their own fort in which to rest.  The first little pig takes the easy way out making his house entirely of straw.  This pathetic little fort is blown down with the first huff of adversity.  In the story, the adversity comes in the form of a wolf, but in real life, it can be anything from a broken down car to a death in the family.
The second little pig works a bit harder, but still takes short cuts.  In the end, his house barely makes it through the puff but still falls when the wolf decides he really wants some pig for dinner.  This sadly is probably the most common approach to life.  We all look around and say, “See we’re protected.  Our fort is stronger than the poor sap’s over there.Why, he is just strung up and fit to be cooked.”  We say all of this as if it is sufficient to be better protected than the one who feels their world has just been turned upside down.
Finally, there are those whose fort seems made of stone.  They have taken the time to cultivate relationships to help them when the winter is long.  They have the mental fortitude to take in stride the misfortunes of fate, and some whose fort is truly sound can even look fate in the eye searching for opportunity.  
When I think of MS and its impact on me and my family, I think of it first as the wolf knocking down so many I know and interact with on the internet.  I see it forcing people to retire early and turning upside down even those thought to be well positioned to withstand a flipped world.  I see it and think how lucky I am.  It did not come after me first.   Well, maybe it did, but my wooden house was strong enough to give me a second chance, a chance to flee towards a stone hearth.
When I think further on MS, some times my long-term view is of it as a sapper laying siege.  Even with the seemingly invincible fortress on a hill, the MonSter remains at the gate all the while weakening the foundation over time trying to find another way inside.  I can only hope to take some of the strength my kids regularly show.  
As if a way of reminding me to stay strong, my daughter had a nasty bowel, clean out.  Last week, she was telling us to make sure to tell O not to be jealous.  While most treatments of golyely (“Go lightly”) involve adults drinking 4 liters to completely clean them out prior to a colonoscopy, A ended up taking 11 liters and the results were massive.  Even after throwing up post us coming to visit the next day, her comment was simply, “Remind me to tell O this is NOT FUN.”  Still, she came home roughly 36 hours after going checking in, and by the next night was sleeping in fort above after having played with her cousins at the annual pig roast celebration of Memorial Day.  Even in the time shortly after puking, A was her normal good spirit.
While it might seem the bears supporting the fort and the sheets draped from closets and chairs represent more of a straw home than a brick fortress, I think viewing it as such neglects the trues strengths of a fort born of fun and love.  It was built under the “Imagine” poster for a reason.  With the secret escape entrance off to the side, there are ways to escape should an intruder gain access.  With the two entrances, dogs visited frequently on their patrols.  With the bed just outside, at least one dog was on guard duty all night long.  With the long main room to go along with the side room for stores of books and lighting, I even had room to sleep under my kids’ watchful care.   The fort was even strong enough to allow me to take advantage of an easy exit in the morning to escape without alerting my sleeping benefactors.  Using the escape, I fed the dogs when they were due.  
After all, no guard can be expected to guard for free, and even a fort of imagined, spiritual stone is only as good as its guards and maintenance.
For the time being, the MonSter will have to go huff and puff somewhere else.  For today, the walls hold while we’ve gone to the Baysox game with our cousins and Louie (the mascot posing with A and O).




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