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.