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A New Perspective

Dealing with a serious illness day in and day out puts things in a different perspective.  

“The mind is its own place, and in itself can make a heaven of hell, a hell of heaven..” 
― John Milton, Paradise Lost

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We Are Not Alone

7/16/2013

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“Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything."
                                                                                                - Muhammad Ali

PictureRiders in The Ride to Defeat ALS - July 13, 2013
Friendship can be an evasive thing for some of us.  We get wrapped up in our careers, families and hobbies and have no time to develop meaningful relationships but we are not made to go through life alone.  We all need a team of supporters to journey through life.  It may be a team of one in the form of a good friend or spouse, or it may be a team of hundreds.  Regardless, this team is a source of encouragement, wisdom, comfort and security during those times when we are confronted by a situation that is too big for us to handle alone.  At some point, we will all face something in our lives that is bigger than us and we will need that team of supporters.  

I was the kind of person who thought I could endure anything alone and then ALS showed up!  I have had the opportunity to learn many lessons during this time of trial.  One lesson is that life is a whole lot easier when we don't go through it alone.  Also, in times of trial, God gives us blessings but sometimes we must look for them.  Fortunately, I didn't have to look hard to recognize God's gift in all the wonderful people placed in our lives to help us through this time.  It is an amazing feeling to be surrounded by supporters wherever we turn.  We would never have had the opportunity to feel so feel so loved and supported were it not for this awful disease.  This journey has shown me that one's success should not be measured by career, position or financial status but, rather, by the depth of the relationships one has cultivated over the course of a lifetime.  



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Generoisty

6/10/2013

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One person gives freely, yet gains even more;
    another withholds unduly, but comes to poverty.

 A generous person will prosper;
    whoever refreshes others will be refreshed.

-          Proverbs 11:24-25


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Generous -  “Showing a readiness to give more of something, as money or time, than is strictly necessary or expected.  Showing kindness toward others.”

Generosity is not something that comes naturally to us.  I recall a time when Corinne was a little less than two years old and Ashley was almost four.  Ashley had a favorite lovey – a Lion King slipper, Simba, to be precise.  She liked to rub her nose with the fur tail and I suppose it tickled.  Ashley was required to leave her slipper in her bed because if it was lost somewhere in the house a search party would have to be called out at bedtime.  We had already lost the mate to the Simba slipper even though Ashley never actually wore them.  One day, Corinne managed to get into Ashley’s bed and take the slipper.  She was sitting on the floor of Ashley’s room rubbing her nose with the tail of Ashley’s beloved Simba slipper just as she had seen her sister do hundreds of times.   When Ashley found Corinne with her special Simba, the cat-fight ensued over the slipper.  By the time I entered the room, tears were streaming and tempers were rising as Ashley attempted to get the slipper away from Corinne while Corinne evaded her all the while shouting, “Mine!”  If you have ever been around toddlers, I am sure you have witnessed a similar scene.

The interesting thing about the above scenario is that the slipper was not Corinne’s even though she staked claim to it.  Ashley had the opportunity to be generous by allowing Corinne to enjoy her slipper for just a few minutes after which, I am sure Corinne would have lost interest and moved on to something else abandoning the slipper in her pursuit.  Since Ashley was staking claim on the slipper, Corinne chose to cling to it all the more tightly.  I find that intriguing because it tends to parallel our behavior relating to our resources and time.  We stake claim to them even though they are gifts from God that He desires us to use generously.  When someone is in need of our time or resources, we tend to cling to them a little more tightly perhaps questioning, “Do they really need that?”.

We are taught to be generous first by simply learning to share.  Then as we get older, sharing expands to generosity as we are taught to give all of something away – like the last chocolate chip cookie.  Some of us get stuck at the sharing level (I'll split it with you) and we continue having a hard time being truly generous (you can have it all).

Generosity is an area I am continuing to grow in.  I see that God wants me to grow in this area by the people he has placed in my life right now and through the situations I am in.  We need help right now and a lot of it!  God has put people in our lives who are joyful and generous givers of their time and resources. I am so thankful for their example of generosity.  I am learning to be a more generous giver thanks to them.  I pray that someday when my time is more my own to give away and when I have more financial resources, I will remember how it felt to be the recipient of such generous giving so I will be inclined not to cling to my possessions and shout, “Mine!” but to quietly relinquish them knowing the joy they will bring someone else. 

Watch for my next blog posting when I will give you the opportunity to be generous!  Think , “Walk to Defeat ALS”.


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Help Wanted

5/16/2013

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"I have found the paradox that if I love until it hurts, then there is no hurt, but only more love. "
                                                                                                                                                       ~Mother Teresa
PictureOur daughter, Corinne, has begun cooking for us!
From taking our first steps to riding a two-wheeler to driving a car, we grow up being applauded as we learn to do things all by ourselves.  I wonder if these accolades lead to that feeling of incompetence when we are unable to “do it all by ourselves”?  Maybe I am the only one who feels like she has to do it all and not depend on anyone else. 

My husband used to tell me that I intimidate people by how much I routinely get accomplished in a day.  Prior to his illness, I could be relied upon to be organized and punctual, knocking out my entire to-do list consistently each day.  Now things are different.  I am rarely on time to anything and I can’t even seem to organize a family dinner.  I tried up until recently to do it all myself and found my to-do list just seemed to grow with each day I got through. 

Perhaps you have seen the video on Akhil’s May 13th post and you have a better understanding of what it is like to take care of someone who is disabled.  Imagine, on top of that, you have a house to keep up, three kids to have relationships with and all the other daily tasks of being a wife, mom and friend.  It was overwhelming.  Then some angels came one by one…

A sweet friend asked if we would appreciate meals.  At first, the “I can do it” attitude made me want to say, “Oh, that’s not necessary.”  Luckily, the stressed out and overwhelmed part of me triumphed and Melissa set up meals for us twice a week.  The meals have been such a blessing.  It is just one less thing I have to plan, organize, prepare and clean up!  I am so thankful to all of my wonderful friends (and some people who barely know us but who wanted to help) who have provided and continue to provide meals for us. 

Another wonderful friend suggested that she would come over once a week for a couple of hours to be with Akhil so I could go out and he could have some fun.  Lori has faithfully come to our home every Monday afternoon.  She taught Akhil to play cribbage - and - how to lose gracefully!  He has been blessed by her visits, prayers and the conversation.

Dear Dawna practices reflexology and she generously offered her services to Akhil.  She has been treating Akhil to reflexology pampering every week.  He feels so good after each of her visits.  She has blessed him with her time and touch.

Most recently, some angels came within the last couple of weeks as they stepped forward willing to assist with Akhil’s daily care.  Mark, Scott and Bob have been such a blessing to me and Akhil by giving me the opportunity to temporarily step out of the role of caregiver and back into the roles of wife and mother. 

What I know for sure is that I cannot do it all.  I am so thankful God put all these people in our lives to show me that I don’t have to.


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Good Friends and Chocolate

2/24/2013

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My wonderful friend, Allison, came to visit last weekend from Dallas, Texas.  There is nothing better than time with a good friend.  We enjoyed the outdoors together hiking in the gorge, ate ice cream and chocolate and just talked.  You know someone is a good friend when you haven’t seen each other in years and yet you can pick up right where you left off!  I also find that chocolate and a glass of red wine can bridge those missing years in no time!

I recently spoke at a church about the storm my family is going through and I mentioned that relationships can be the life preservers that help get you through the storm.  My main life preserver is, of course, my relationship with God but Allison’s visit was also that for me.  It was like someone threw me a rope so I could come up for air for a few minutes before I was tossed back in the waves to struggle some more.  I hope you can be that “life preserver” to someone you are close to or even someone you are not all that close to!  Maybe the storm is there to drive you into a closer relationship.  Be sure you look around to see who might silently be calling for help.

In times when there is no human life preserver, I console myself with chocolate.  I am sharing my new favorite chocolate chip cookie recipe below.  I hope you enjoy and think of me when you make them!  You could really let me know you are thinking about me by bringing me a few :) 

                                                                          Salted Dark Chocolate Chip Cookies
   3 cups all-purpose flour
   2 teaspoons baking powder
   1 teaspoon kosher salt
   1/2 teaspoon baking soda
   1 cup (2 sticks) unsalted butter, room temperature
   1 1/2 cups (packed) light brown sugar
   1 cup sugar
   1/2 cup powdered sugar
   4 large egg yolks
    2 large eggs
    2 teaspoons vanilla extract
                                                                          16 ounces dark chocolate chips 
                                                                          Maldon or other flaky sea salt

1.     Place racks in upper and lower thirds of oven and preheat to 375°. Whisk flour, baking powder, kosher salt, and baking soda in a medium bowl; set aside.

2.     Using an electric mixer on medium speed, beat butter, brown sugar, sugar, and powdered sugar until light and fluffy, 3-4 minutes. Add egg yolks, egg, and vanilla. Beat, occasionally scraping down the sides of the bowl, until mixture is pale and fluffy, 4-5 minutes. Reduce mixer speed to low; slowly add dry ingredients, mixing just to blend. Using a spatula, fold in chocolate.

3.     Spoon rounded tablespoonfuls of cookie dough onto 2 parchment paper-lined baking sheets, spacing 1-inch apart. Sprinkle cookies with sea salt.

4.     Bake cookies, rotating sheets halfway through, until just golden brown around the edges, 10-12 minutes (the cookies will firm up as they cool). Let cool slightly on baking sheets, then transfer to wire racks; let cool completely.

5.     Store airtight at room temperature or eat them all in one day so you don’t have to worry about it!

  


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What Does ALS Look Like

2/15/2013

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Ruben, one of the many people who obeyed that "nudge" and took time out of his day to stop by and make Akhil smile.
ALS starts out like a sly snake creeping through the body and subtly impacting different aspects of the victim’s physical being.  The speech may be affected by the occasional slurred speech.  A limb may be affected as evidenced in weakness.  Swallowing may be impaired so that the victim frequently chokes while eating or even swallowing his own saliva.

As ALS progresses, one would think it would be a huge, scary monster that is unbeatable.  It affects every aspect of the victim’s life.  The ALS patient is unable to be independent; to the contrary, he depends on others for every aspect of his care.  It would certainly be understandable if the victim became bitter and angry throughout this process but that is not my experience with ALS.  I have found that over time, ALS settles in to its true identity – A Love Story.  How is this terrible disease a love story you ask? 

We live in a country that values independence and self-sufficiency.  ALS quickly strips its victims of both of these fundamental needs.  As dependence on others becomes unavoidable, the love story begins to unfold.

Akhil was a pretty independent guy before ALS began to affect him.  As the disease began to impair his physical abilities, he had to rely on me to assist him with most routine tasks:  dressing, showering, shaving, flossing his teeth…  This enabled me to express a love for my husband that I never had a need to express before ALS.  As Akhil was cared for, he knew I loved him in a deeper way than he ever imagined.

The love story expands as God reaches out to families dealing with ALS through His people.  God nudges the hearts of his people to take action of some sort such as to make a phone call, send a note, take over dinner or help with a home maintenance project.  When His people act on those nudges, God’s love overflows to the family suffering.  As others serve us, we feel ensconced in love.  We feel comforted and loved as we are cared for in a way that would never have occurred were it not for this illness. 

We are part of A Love Story that is bigger than any of us.  The love story goes beyond our story and into God’s story as He loves us through this difficult time.  What is your role in His story?



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Mom

1/31/2013

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We go through phases in life with our mothers:  we love them, we find them annoying, we realize they were right, we ask them to forgive all our horrible behavior, and finally, we can’t imagine losing them.  Hopefully, if you are past age 25 you have moved to the last one or two steps in the process.  I have considered my mom my friend for many years and I talk to her daily on the phone usually about nothing of any consequence much to the bewilderment of my husband and brother.   Men must not understand that need for connection that can only come from “quantity” time that no amount of “quality” time can compensate for.

I just enjoyed some “quantity” time with my mom who visited us from Florida for a week.  I always feel her visits are never long enough.  While the daily calls are nice, there is nothing quite as sweet as a mother’s presence.  My mom’s visit was not unlike our phone calls – we talked about a lot of unimportant things and we laughed at my girls’ stories.  As the days passed, there was a lot of silence between us, not because of hostility or a loss for words, but because sometimes there is no need for words.  In that silence laid many unspoken “I love you’s” and “I understand’s”.  Isn’t it great how a mother doesn’t have to do anything but just be?

I am so glad I still have my mom to laugh with, talk to and hug.  


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Reflections

1/26/2013

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It occurred to me that holiday letters typically reflect only the high points in our lives - like the tangent line with a slope of zero running across the maximums of the sine wave of our lives.  (I allow the engineer in me to surface now and then.)  We typically choose not to share the mediocre or low points of life in these communications.  

Sometimes we may not want people to know our struggles.  You know we are struggling.  You know beneath these photos is a family experiencing pain and sorrow but we choose to focus on the high points.  Even in our struggles, we can find reasons to be joyful and I hope you see that in our summary of 2012.  Better yet, I hope you can rejoice in all the blessings you have experienced in spite of any challenges you face.
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    Laura Jhaveri

    Wife and mother coping with the daily struggles caring for a family with a serious affliction.

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