Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Saturday, October 30, 2010

Consider This - From a Person with ALS

We received this from Jan Elser, a person with ALS (PALS,) on the email list from our ALS support group. I thought it enlightening and decided to pass it on to you. I've made small changes to Jan's original to fit Frances' particular condition. Thank you Jan.

Consider This

What if you woke up in the morning at your usual time of 5:30, eagerly waiting the new day but could not get up. What if you wanted to open the shades and view Gods creation yet one more time but can’t. What if you can not open the door every morning and breathe the fresh air. What if you could not dress dress yourself, get your clothes out of the closet or hang them up, put on your favorite jewelry. What if you could not shampoo your own hair or bathe yourself. What if you had to wait until a helper arrived to be lifted painfully in a sling, moved across the room on an overhead track and set on a potty chair, hoping your body will do what it has done for 40 years by itself because you can’t control it any long. What if you could not walk over to the coffee pot and brew a fresh cup of coffee for yourself. What if you could not pour yourself a cup of coffee nor carry it to your favorite chair. What if your hands can no longer lift your immobile legs into place.

What if you only had no motor skills, not being able to move anything except your lips and eyes. What if you can not reach the remote control to turn on the TV. You can not walk, stand, set down or get up – at all. What if you could not straighten your pillow at night, lift your legs into bed, or turn over in bed. What if you can not reach the telephone. What if you can only go places with proper facilities and never go by yourself. What if you could not cook or serve your own food. And even if you could, what if you could not eat except through a tube in your tummy. What if you can not hold your children in your lap, touch them, kiss them, or even see them unless they stand in the right place in your room. What if you can not open your car door, or any door, or drive yourself to Starbucks or anywhere at all. What if you could not speak and must communicate by controlling a computer with your eyes, typing out what you want to say one slow letter at a time moving your eyes over a keyboard and clicking by blinking.


You twist your leg around and give yourself a swift kick in the butt and say to yourself, look Chickie Poo, life goes on. I still have my eyesight and my hearing. I can breathe (albeit with a ventilator through a tube in my neck/throat.) My mind is active and in tack. If they come into my room and stand in the right place I can see my children. Here is so much to be thankful for. I have hundreds of my friends praying for me.

I have a husband who is attentive to me. No one has refused to help me when I ask. We have 2 healthy children. God has taught me to let go of earthly concerns. It is humbling to be dependent on others for my existence, but that is where God wants me to be.

Counting my blessings,

Jan [Frances]

5 Shared:

At Saturday, October 30, 2010 11:02:00 AM, Anonymous Anonymous Left a thought...

Sometimes I do think about those things that this horrible disease has stolen from Frances and I can get overwhelmed by what I see happening to your precious family. But, I do have to refocus on all that the enemy has not stolen and can not steal. To be grateful for all He has done in your lives. To have an attitude of gratitude, an attitude of Praise. Thank you for sharing Scott and Frances. Love, Teresa Mathia

At Saturday, October 30, 2010 1:31:00 PM, Anonymous Anonymous Left a thought...

That is a sad but beautiful description of what life is for Frances & those around her. All of the things she can not do for herself is why her caregivers need to be certain that every need & desire of hers is met. Can she listen to her music when she wants to; can she read her ebook or Bible on her own; can she watch the tv channel she wants; does she have beautiful & special things to look at in her room; are her favorite scents surrounding her? These are the little things we take for granted, but these are the things that will bring her comfort & a feeling of some control as long as she can access these things on her own when she wants to. Luke 6:30-36 Do unto others as you would have them do unto you. Give to everyone who asks of you...
Be blessed in all you do & rely in Christ who strengthens you!

At Saturday, October 30, 2010 9:03:00 PM, Blogger Mamasita Left a thought...

Well said! Very very powerful words.

At Sunday, October 31, 2010 7:28:00 PM, Anonymous Darlene Left a thought...

Jesus said,"Behold, I am coming soon! My reward is with me, and I will give to everyone according to what he has done. I am the Alpha and the Omega, the First and the Last, the Beginning and the End."

Amen. Come, Lord Jesus!

Rev. 21:12-13;20b

He will wipe away every tear from your eyes...

Crying with you.

At Thursday, November 04, 2010 4:25:00 PM, Blogger Deb Left a thought...

I wish I had the words to say all that is in my heart. Frances, as I weep for you when I pray, they are tears of sadness and rejoicing all at the same time. I can't possibly begin to imagine all that you have endured and all that you lack, but I know that you serve a God who is standing with His arms wide open. Arms to hold you close, to keep you near His heart. Rejoicing in knowing that you know Him....for what greater hope is there in this life? I pray for you each day...always and still...sending a you, Deb


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