Me and ALS
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Hard Stuff

5/11/2017

21 Comments

 
​“I am dying”, Akhil spells by raising his eyebrows to select a letter as I say the alphabet. 
                                                “Me too”, I think to myself.
I ask him, “How do you feel about that?”
                                                “It sucks”, resounds in my head.
He responds by going through the alphabet again, “I will miss you.”
                                                “Me too.”

Is it ever easy to let go when someone close to you is dying?  I think it is safe to say that we selfishly want our loved ones to cling to life, to be with us a little longer, fighting for every breath here on earth unwilling to concede defeat to whatever is battling inside them.  There comes a point when the person realizes they are losing and they begin to question which is worse, the pain of holding on or the pain of giving in.  If we are courageous, we question essentially the same thing, “Which is worse, the pain of their suffering or the pain of letting them go?” 

As Akhil struggles for breath, I feel a tightness in my chest as I acknowledge that the end of this journey is nearer than I would like.  A part of me is dying along with him.  The part of me that imagined growing old together is withering inside.  The idea of retiring somewhere warm and spending our golden years traveling the world has to be put to rest.  The vision of Akhil being healed and reaching out to take my hand or embrace me will have to reside permanently in my dreams.

Perhaps it is difficult to say “good-bye” because we are not only letting our loved one go but also a piece of ourselves.  It seems like that departure will leave us wondering if we will ever feel whole again.  Will we miss that part of ourselves as much as we miss the one who is gone?

In spite of this journey winding down for us, I will never give up hope, hope for a cure for ALS, for a treatment that can restore function to those already afflicted with the disease and still battling, and hope that my heart will go on.  
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21 Comments
Teresa R Linberg
5/11/2017 09:41:55 am

I am so blessed to have such strong Christian friends in my life. As my tears flow so hard that I can barely read this today know that you have both been in my thoughts & prayers during this long journey. I only wish we lived closed by so I could visit but since that is not so I send my love & hugs along with my prayers for God to keep you & your family strong & comfort you with his grace & mercy in the coming days. Love always - Teresa

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Cecelia
5/11/2017 10:29:02 am

Akhil and Laura, my dear friends, I love you both so much. I don't pretend to understand God's will in not healing Akhil in this life, but I do know that you both have profoundly touched my life and so very many others by your love and faith.

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Pam Hough
5/11/2017 10:29:12 am

Laura and Akhil, I've watched from afar as you have braved the most difficult journey a loving, committed, and faithful couple could imagine. I remember the day you called and asked me to pray for Akhil when you learned his diagnosis. I've followed your posts and blogs and have been inspired by your courage, determination and most of all, your faith in our Lord. All for His Glory and by His power, you have endured. All this being said, your words are piercing my heart as I know the relinquishment of your will and dreams are giving way to God's waiting arms for Akhil. As tears roll down my face, I am convinced God has allowed all of us to see him in your beautiful story if living hope! I love you guys so much. Your beautiful daughters have a legacy that will live for generations. I'm sure there were many times you experienced every emotion known but finishing strong and finishing together has defied the assault of this terrible desease. ALS did not defeat your love for God, each other , or your family. My prayers are for constant and fervent for peace, comfort, and healing. Hugs to each of you! If you need anything ever, please call. I'm here.
Love Always, Pam

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Chadd
5/11/2017 10:31:52 am

Heart wrenching.... thanks for sharing.

This road has been longer than most could have expected. Akhil has run an amazing race with you and the girls with him all the way.

Your family and your story have, and are still, impacting lives.

Wish I were closer.

Chadd

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Judy
5/11/2017 11:07:35 am

Cecelia, this is wonderful!!!!! Is this written by you?

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Lance Christian
5/11/2017 12:54:14 pm

Thank you for this candid and poignant post.
Akhil - You Rock!. Laura - You Roll!
I will always think of both of you as Rock and Roll Superstars!

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Dan
5/11/2017 01:23:40 pm

Akhil was there for me in bad times many years ago. Please know that I'm not physically present, but I am there with Akhil as his brother in Christ- today and in eternity.

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Bo
5/11/2017 02:43:21 pm

Praying for you guys on this particularly difficult stretch of road. May grace go before and behind. We love you! - Bo & Team Stern

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Valerie Lavely
5/11/2017 03:46:22 pm

Akhil, You taught us how to remember, Judy and I and, neither of us can remember all you taught us :) " 3 legged stools" and "the more abhorrent the longer lasting the impression" are two that have stuck with me; some of the later have faded (thankfully) What doesn't fade is the memory of your smile and your enthusiasm as you taught us a variety of things, like how to listen and how to be kind to others by being fully present. You challenged us to think more deeply about what we had assumed. You kept living not just existing. You challenged ALL that opposed you. You kept pushing the glass ceiling, asking the hard questions and believing in God and us. Challenged by your example we took a closer look and believed, too. You have demonstrated courage, creativity and commitment (firmly seated on that stool) and been an example for us. You've lived a legacy and left it in our memories, in our philosophies and theologies. We are improved and encouraged and continue to be stretched by our association with you. Thank you for making a lasting impression! Thank you for the individualized investments you made in us and that we've watched you make in the lives of others, including your family. They are spectacular - you know that. They will continue to remind us of You and of facing things that aren't easily faced . . . that should make you smile! God knows the plans He has for us, plans to prosper, not to harm. You have given a costly gift. We are richer. Praying for your peace and sweet dreams and a smooth landing on golden streets.

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Nicole
5/11/2017 07:50:33 pm

Thank you for sharing your journey, you have forever touched my life💕

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Susan Smith
5/11/2017 08:02:33 pm

Thanks for continuing to share your story. I still smile when I think of you at Hebron Community Church. I was new and had been gone from the church a long while. Your words spoken in the greeting\welcome helped me come back to church.Thank You!!

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Kent
5/11/2017 09:16:52 pm

Akhil and Laura, Thank you for sharing this difficult journey with us. Your are in my prayers.

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Aubrey
5/11/2017 10:10:47 pm

Sending strength and hugs and deep appreciation for the love and insight you have both shared. I am better for knowing you, Akhil. Thank you for your smile and the many other gifts you have given so many.

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Sue Simons
5/12/2017 05:46:35 am

Laura, I am so sorry to hear this. While we've all known for sometime it's would come, I think we've hoped it wouldnt. My prayers are with all of you during this time.

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Phil link
5/12/2017 04:46:05 pm

Dear Laura, Akhil and family. Im so so sorry. Praying for you all. Love from your mate down under.

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Stephanie Johnson
5/12/2017 09:57:39 pm

Hi Akhil, I am so glad I had some time with you a couple weeks ago, we shared tears, memories and some really good laughs. You may not know it but you mean the world to us.
You are the famous Ahkil that our friends hear stories about, as well as passed on wisdom and inspiration. Your influence lives on through all of us touched by you.
I thank God that you had the notion to rent a room from a humble family, and that was us. He had a plan by placing that idea in your head. It was so much fun being your landlord/ roommate. And best of all, Duane and I grew under your nurturing care. Separately and together.
Remember when you told both of us that I was smarter than him? I suspect that was an experiment on your behalf and I can only imagine how funny it was watching the ripples it caused and the change in "power". But... Your confidence in me changed me... and all the paths I choose in life will reflect that confidence.
Thank you, Duane and I both love you very much.

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Monica Binns
5/12/2017 10:10:25 pm

Dear Laura, Akhil, Ashley, Corrinne and Jordan,
I am very sorry for each of you.
And I'm praying for all of you.
Please hug Akhil for me. May the Lord
Carry each of you through this.
You have all been very courageous...God be near to each of you.
Love in Christ Jesus Our Redeemer!
Monica

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Bill Shuler
5/13/2017 08:36:39 am

Laura & Akhil,
I have no words. Prayer to the Creator of all things for you.
Bill Shuler

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Sharon Richards
5/14/2017 07:40:08 am

My prayers for your family. You don't know the way people touch and form your lives . Akhil is one who could reach in and touch everyone he meets. I remember the day we met he had asked if I was one of those woman who my husband kept barefoot and pregnant. At first I was taken aback then his mischevious smile came out showing his fantastic sense of humor. Your wine parties are some of my best memories from our neighborhood. Akhil
Gave me hope (as well as you Laura) when I was losing mine.

God have me a gift by knowing both of you. Akhil the world will lose a great man when you leave us but God has done great things with you while you were here. We all can only hope to leave with such a great impact on others. You have done great things, and should leave this world knowing it. My tears and prayers are with you and your family.

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Patty Watkinson
5/21/2017 05:59:56 am

Bless you for sharing your hearts throughout this journey, Laura & Akhil. You are truly a special couple and have loved each other well. Your faith and love of Jesus has touched so many lives more than you know. My prayers don't cease in asking for complete healing and I still see Akhil in my dreams fully restored 🙏🏼 We love your family and pray for His strength to carry you through and for Him to hold you all tightly in His arms 💕

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Joan Sutter Launius
5/25/2017 07:37:16 am

Please forgive me for not posting sooner. I don't even know if you remember me. I lost track of you about 25 years ago. We had 'adaptive' p.e. together in high school (1981 or 1982?). We played a lot of backgammon and ping pong! You also came to my house to play D&D with my brother and Dennis and Eric. I remember tagging along with my brother sometimes on Friday nights and we would stop at your house. It always smelled so good because your mom was always cooking. Your house was the first place I got to experience cable tv and we watched music videos on MTV! Fast forward 30 years or so ... Last fall when Dennis visited you I found this website and have since been catching up with your life. Thank you so much for writing and sharing your experiences. You make me smile. I totally feel connected to you again. You have a lovely family. I want you to know that you and your family are in my prayers.

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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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