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Independence Day by Laura

7/4/2018

10 Comments

 
As I write this, I am sitting in bed looking out the windows where there are beautiful fireworks filling the sky.  In spite of the loud noise, Akhil is sound asleep in his hospital bed nearby.  Our house sits on top of a hill and from our vantage point, we can see many of the neighbors’ displays as well as the ones put on in the towns across the river.  It is truly spectacular.  I am watching it alone this year reminiscing in my mind of barbecues on our deck and time with family and friends on previous July 4ths.
​
Akhil and I are approaching our own Independence Days.  Akhil is surely nearing his final days.  He is sleeping all but a few hours every day.  His body is ravaged with battle scars and it seems incapable of healing itself.  He has sores all over – one on his head from the strap of his AVAP that he wears almost constantly now, one under his nose from the AVAP mask, his feet are covered with bruises and sores from simply resting in one place for too long, the skin on his bottom has peeled away leaving a raw bloody surface that is incredibly painful to sit on and his mouth has sores where the suction tip has sucked away patches of skin as we tried to remove the mucous that had collected.  Each day seems to bring on a new wound but this soldier just refuses to surrender. 

I asked Akhil a couple of days ago if he felt like the end was near and he said, “No” by squeezing his eyes shut.  I asked him if he WANTED the end to be near and he said, “No”.  Unfortunately, regardless of what he wants, his body seems to be saying that his days are numbered.  It seems to be using different means of inflicting pain in order to elicit a surrender from Akhil.

It is hard to watch someone suffer so much.  It is really hard when you are the one causing the pain.  Akhil defecated in his brief this morning so I had to clean him up.  Normally, this is a fairly speedy process taking about fifteen minutes or less.  Today, because of the condition of the skin on his bottom, it took about an hour.  Part of that was because I had to proceed strategically and delicately as every touch of the skin caused it to drip bright red blood.  The other reason it took so long was because I had to take breaks to regain my composure as the nausea hit me in waves when I thought about how much pain I was causing Akhil with every touch.

Soon, Akhil will be free of all this pain and suffering. 

When Akhil is free, I will also gain a freedom, independent of him, no longer responsible for his care and well-being.  I will miss him so much but the reality is that I have been missing parts of him over the last seven years and almost all of him for the last couple of years as ALS has taken him one piece at a time.    

While I am looking forward to my independence, like all freedom, it comes with a high price paid by someone else. I am grateful to Akhil for fighting a good fight and for being a relentless soldier. He set a fine example of how to persevere even when times are tough and how to surrender to God's plan even when it is tempting to take matters into your own hands.

I want Akhil to be free of pain and suffering. One day fairly soon, we will all celebrate his freedom on HIS Independence Day.

July 3, 2018 - Akhil loves it when the girls sing - They treated him to a few moments of ridiculousness - yes, that is a real snake wrapped around Ashley's neck... I never thought I would have a dog and certainly never a snake in my house as a pet!  
10 Comments
Heide Presson link
7/6/2018 02:43:37 pm

I think of your dear family often. My love and heart are with you all.

Reply
Laura
7/9/2018 10:21:59 pm

Thank you, Heide!

Reply
PEGGY CORCORAN
7/6/2018 06:06:28 pm

GOD BE WITH ALL OF YOU AT THIS DIFFICULT TIME. LOVE AND PRAYERS

Reply
Cecelia Henderson
7/6/2018 06:38:18 pm

Laura, thank you for so bravely and honestly telling exactly what you and Akhil are going through. I am praying that Akhil will let go of this life and grasp as fiercely to the next as he has to this one. I love you.

Reply
Erica Evans
7/7/2018 10:28:50 am

Laura-thank you for writing these articles and sharing them. I'm a former member of the Vancouver CoC and had the opportunity to hear Akhil's sermons just after his diagnosis. It's been amazing to see God's power and grace through Akhil and you and your family as you've shared this experience with us. Me and my family (some who are your neighbors) have and continue to pray for you all. I send you christian love and virtual hugs as you continue through this heartbreaking experience.

Reply
Laura
7/9/2018 10:23:32 pm

Thank you, Erica. I hope by being transparent and sharing our story that we help someone out there.

Reply
Landis Epp
7/7/2018 10:43:32 am

I often share at funeral services that I conduct how that as a young couple the vow, "in sickness and in health, in prosperity and adversity, till death you do part!" is often easily agreed to, yet have no idea what that might really mean. You Laura and the girls are to be commended for the amazing support you have been in this whole battle. And you Laura have fulfilled that vow in full. I have often said that our ALS family is filled with the bravest people who face a cruel and horrible disease with amazing strength. You have said it so well, and we know that for Akhil "the best is yet to come!" in his new home with "no pain, no tears, no sorrow, and where there will be joy forever more." You, my brother and sister, are in my prayers.

Reply
Laura Jhaveri
7/9/2018 10:24:51 pm

Thank you, Landis. We so appreciate you and all you do in the ALS community.

Reply
Laura Schofield
7/7/2018 11:31:21 am

Thanks for the detailed update. Praying for strength for you and your family during this trying time.

Reply
Laura Jhaveri
7/9/2018 10:25:49 pm

Thank you, Laura. Nice to be back in touch after so many years.

Reply



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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
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    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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