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.

Thursday, January 27, 2011

Don't Know What To Say

It is hard to provide updates when you don't know what to say. Not much is changing. The girls continue to go through the routine of school. We continue to go through the routine of care and work.

We are ever grateful to those that come to help, provide meals, spend time etc. I have been "guilted" into providing an update so here it is. Please don't be mad at me for taking the easy way out and "stealing" another's blog. Jenny wrote this and I not only am going to link it here, but also cut and paste it. Why, because it gives you a good insight into what's going on every minute of every hour in our household:

I don't know how to start this so I'm going to just type what comes through my mind and how I'm feeling.

When we have someone available to stay with Scott and Frances I go to the once monthly ALS caregivers support group. There I met Donna who is the wife of Larry. Larry has ALS.

Yesterday morning Scott told me that Larry passed away on Thursday night.

Strangely, the news hit me hard. I'd only met Larry once, and his wife a couple of times. He had the same disease that Frances is dying from and that is almost like a bond bringing you closer together.

To put how I’m really feeling into words is that I'm scared.

I'm scared that I'm not strong enough. I'm scared because this will be the first death of a family member I'm close to. And although this fear has been in the back of my mind since I moved up here, it's gotten worse.

I think this fear is what has been causing problems around the house. After almost 5 months of getting close to the family here, I'm trying to distance myself so it doesn't hurt so badly. But I'm not succeeding. I'm only causing more pain, and not just to me. I'm causing pain to everyone in the household. Scott is getting frustrated with me. The girls are wondering where the fun Jenny they love is. And worst of all, I've hurt Frances. Not physically hurt her but through the things I've forgotten to do, the things I've said, have led her to be hurt and Scott to get upset with me.

I don't want to leave. And the family doesn't want me to leave. But I have to work through this fear.

I feel like God led me here and is now holding me at arm’s length. I feel like I can't find him. And it's painful emotionally and now physically. My body is hurting.

I just want to be left alone to work through this but I also want human comfort. For those of you who have read about love languages, I am a physical touch person. I miss being hugged by my mom. I miss being held and comforted by my sisters when I need to cry. And unfortunately having the kids come hug me or sit in my lap only takes care of part of that emotional yearning to be held and I don't have anyone else to turn to.

I don't know where to go or what to do. I need to repair the pain and problems I've caused but I don't know how. I'm searching for an answer and I don't have one. Not for myself and not for the loved ones who are asking.

6 Shared:

At Thursday, January 27, 2011 2:13:00 PM, Blogger Hero Left a thought...

Jenny (and Scott) -

If you weren't scared, I'd be worried. You all have the terrible misfortune of knowing what's ahead of you and having no ability to stop it or know when the end will actually come. Scary.

Carrying that fear is exhausting enough. When you add it to the actual day to day tasks of caring for Francis and the girls and each other, the weight must feel unbearable at times.

You are doing amazing things, even in the frustrating times. Even when the work feels so grueling. Caring for each other, especially in our greatest time of need, is our truest calling.

You are loved, all of you, from afar!

At Thursday, January 27, 2011 2:18:00 PM, Blogger Sue Z Left a thought...

Scott, I think it's perfectly acceptable to have Jenny post for you at this time. Jenny your words are so touching. I don't think anyone can fully understand what you and Scott and the girls are going through. Continue to do the best you can ... there is no guide to caring for a dying loved one. No "normal" way to deal with anticipated grief on a daily basis. No way to process the pain that those precious little girls are feeling and will feel. You and Scott will look back some day on all of the words that you have written with new understanding and appreciation for the fact that you attempted to document the journey. You may be able to make someone else's journey easier one day.

At Thursday, January 27, 2011 2:41:00 PM, Blogger Debbie Dunham Left a thought...

What an experience to go through! Jenny will be a much stronger woman from having helped in your family.

At Thursday, January 27, 2011 8:09:00 PM, Blogger Deb Left a thought...

I have no words....

....Jenny spoke so eloquently from the hurt in her heart...

...and you know that I continue to pray...

...always...and still...

At Friday, January 28, 2011 7:39:00 AM, Blogger Lora Left a thought...

Scott, You all are in my prayers including Jenny who is going through her own hardships and personal conflicts. I will go to her blog and leave a comment for her because she needs our support too. May she find the strength to hold on and stay to help you through this if that is what you want and need.

At Wednesday, February 02, 2011 8:22:00 AM, Anonymous Dennis Pyritz, RN Left a thought...

I just found your blog. As a fellow cancer survivor, my thoughts and prayers are with you.
Also...Great Blog! You are a credit to the cancer blogging community. I have added you to my blogroll, “Cancer Blogs Lists” with over 1200 other personal cancer blogs at, a cancer networking site featuring a cancer book club, guest blogs, cancer resources, reviews and more.
If you have not visited before or recently, please stop by. If you agree that the site is a worthwhile resource for those affected by cancer, please consider adding Being Cancer Network to your own blogroll.
Now that you are listed, you can expect to gain a wider audience for your thoughts and experiences. Being Cancer Network is a place to share and communicate.

Take care, Dennis (


Post a Comment

Thank you from Rebekah...

Back to Rebekahs home page...