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Laura's Perspective

9/7/2015

6 Comments

 
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A lot of you know that Laura is my first wife. I am happy to report that she will be my last wife. She has been a pillar of strength throughout my illness. But I know her well enough to know that there is something that she is not telling me.

I wrote a blog last week asking everyone who takes care of me a couple of questions.  When we were done with the blog I asked Laura the same questions.  She hesitated. I could see it in her eyes there was something very painful that she did not want to tell me. We dropped it, but over the weekend she decided to write her response to the questions.  Talking about it would have been impossible.  Too many emotions! So here is her answers.

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What has been the hardest part about taking care of Akhil?

 When Akhil posed this question to me, my first thought was probably not what you might think. You might assume that the physical challenges would be the most difficult aspect of care, afterall, there is a lot of lifting required.  

There is also a lengthy routine to his day which can be fairly demanding. Just the fact that my husband requires continual care may seem like the hardest thing to swallow.  However, the most difficult part of caring for Akhil is not physical at all, but emotional. 

It is hard to maintain a positive attitude day in and day out while I watch Akhil's health decline, but I know that is what he needs most. He needs to be able to count on me to keep his spirits up and to pull him out of the pit of despair rather than wallow in it with him.  

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One of the first things Akhil lost physically was the ability to button his own shirts.  Those small finger movements were tricky.  It was hard for me to make light of this because this was one of the first things that made his disease seem real. 

Little by little, other abilities were lost.  The next thing he lost was the ability to feed himself.  This is probably where the realization of the level of time and care that Akhil would require hit me.  Evidence of the disease’s progress was displayed in Akhil’s compromised abilities.  I tried not to display any signs of worry; only hope that someday there would be a treatment or a cure. 

It is hard to keep my need to express my pain under wraps so we can focus on Akhil's emotional pain as he confronts the disease that will eventually take his life.  I recognize that he needs to be allowed to express his sorrow at leaving us too soon, abandoning his dreams and being humbled by the loss of his body's control without feeling like my pain is competing with his. There will be time for me to express my sorrow but now is not the time.   Akhil needs to be allowed to feel that his pain is far greater than mine, and at this moment, it is. 

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What did I expect coming into Akhil's life?

Unlike the others that Akhil posed this question to in his previous blog, I entered Akhil's life many years ago when he was young, healthy and full of dreams and ambition. I expected my life with Akhil to be an adventure. That expectation has been and continues to be met!

On our 10th anniversary, I gave Akhil a picture of the wildest roller coaster you can imagine. To me, it was an accurate depiction of our journey through life together. Honestly, it still is an accurate depiction of our lives together. 

ALS may have shrunk the course of our journey but we have not allowed it to alter the amplitude.  We still experience some amazing highs together and we enjoy the slow climbs as we tackle new endeavors.  I expect that before our lives together are over, we will experience the rush of one more rapid, exhilarating descent and then we will slowly come to a hard stop. 

At that point, we will get off the roller coaster together.  I will proceed to the next ride alone but hanging on to the vision of the wild ride we had together.

 And now these three remain: faith, hope and love. But the greatest of these is love.
 I Corinthians 13:13

6 Comments
Dawn Harris
9/7/2015 07:02:32 pm

Laura you are a wonderful woman. I'm glad you found each other. He was such a wonderful carrying person in High School. Many blessings to you

Reply
Ozzie Lomax
9/7/2015 07:31:19 pm

What a wonderful wife you are. May God be with your family

Reply
Melissa Kokb
9/7/2015 09:49:22 pm

Always an inspiration... Sharing your journey humbles me & reminds me what this life is truly about - the relationships we have with God & with the people around us. Thank you both for looking beyond yourselves & reaching out to others along the way!

Reply
dinesh jhavdri
9/8/2015 02:45:45 pm

You both love so much each other deeply and meet again in Nxt birth to fulfil desires that are bundled.you replied Akhil openly without hurting him.you wrote very well so reader also feel.. I understand situation that you are in together with ART of balancing. To act against emotions the most difficult task on this earth. Love to all. Dinesh jhaveri Mumbai.

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AdelineBlumentritt
9/9/2015 03:59:24 pm

Dear Laura As your Mom I am so proud of you. Your letter spells out what are very special person you. are. Not only to your family also to your friends. You have always been there for me. I am here for you. Not in person . My thoughts are with you every day. Love you so very much Mom

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Brenda Glass link
9/27/2015 02:49:47 pm

Dearest Laura, You are living out the beauty of a Biblical marriage! I am so glad you have help and you remain in Bible Study Fellowship. I think you know all 3 of my brothers had MD. I know your journey from the perceptive of a sister and as a wife, I know your walk is harder. Akhil is not the only one who inspires as your family deals with ALS. Thank you for being transparent and know that I am praying for you and your family. waiting for HIS return, Brenda Glass

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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
    ​
    God continues to show his love for us through his people.  Thank you to everyone who has reached out to us, prayed for us, visited Akhil, brought us a meal and served us however God led you to serve.  Continue to follow those urgings from God in serving those who are struggling.

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    Akhil and Laura Jhaveri

    Applying the skills they've learned in over 20 years of marriage, this couple faces the challenges of ALS together. MND or motor neuron disease is deadly with no known cure.  The Jhaveri family has to endure this battle and show the world God's love!

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