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.
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Wednesday, March 01, 2006



Done?

This is really strange to us. It is literally the first time since the beginning of April last year that we do not have something (and LOTS of somethings) scheduled in the next week. In fact, we now have NOTHING on our medical schedule until May. We are in a foreign land and are not quite sure what to do with it.

Today was a good example of "Advocating For Your Child." Rebekah had her kidney function test. Nearly an hour of watching her kidneys function under a CT type scanner while she was under yet another general anesthetic. We had asked and asked to have her central line pulled at the end of this test while she was still under but all we could get for the last 2-3 weeks was "we just can't get the schedules to work out" or "the surgeon is not available..." That meant another general anesthetic tomorrow just to pull the line.

Well, after Rebekah went under mommy and daddy went out to the fountain area where we like to sit. While there Rebekah's surgeon walked by and daddy got his attention. We asked him whether he had a moment to talk and he commented that he had lots of time, he was "just teaching" today.... Oops. We asked "how would you like to go pull her central line?" He was concerned that it was an emergency because it was infected or something but we explained no, it would just save a trip and another general anesthetic. It made good sense to him and he took off with his interns in tow to go take care of it.

Daddy had to go to the surgeon's office and get a consent signed - the surgeon's staff were not exactly pleased with him making his own scheduling on the fly - but it made sense to the patient and he was willing to do it. We thought that was TOTALLY great and the sign of a great doctor. It never would have happened, however, without mommy and daddy advocating (pushing) for Rebekah.

Rebekah is now free of her central line (still has her g-tube in her tummy.) She is free from that infection risk, from the daily maintenance and the traumatic dressing changes. In fact she can actually take a bath -- although it will remain to be seen how well that will go over after so long without being able to.

Help us out - what do "normal" families do with their time? It is a rhetorical question. But as an exercise in thought, , please look back on what we have had to do with ours over the last 11 months and compare that to what you are doing with yours. Are all of the things that are taking up your time really priorities or should you consider making some lifestyle changes so you can focus your time differently? We ask because we know it can be done. You too, if forced to undergo what we have would be able to do it. So the big question is - should you make changes to spend more/different quality time with your family before you are "forced" to or even worse, before it's too late?

12 Shared:

At Wednesday, March 01, 2006 1:31:00 PM, Anonymous Debbie Left a thought...

Thank you, Frances & Scott! Once again you put our lives in perspective! That has been a blessing to us since the first day we read Rebekah's blog.

 
At Wednesday, March 01, 2006 2:32:00 PM, Anonymous Sue - NJ Left a thought...

What a beautiful thought to encourage others to appreciate what they already have and may easily be overlooking! I have (silently)been following your journey for many months now ... I don't even remember how I became acquainted with your site ... but I am so impressed by your strength and touched by Rebecca's courage. May your continued faith and reliance on our heavenly father keep you strong and bring you joy and hope in the coming years.

 
At Wednesday, March 01, 2006 2:43:00 PM, Blogger steve Left a thought...

Catch up on Laundry??

;-)

 
At Wednesday, March 01, 2006 3:13:00 PM, Blogger JodiTucker Left a thought...

Please define "normal" since that is a highly subjective word!! After a number of years back in public education, I do not think there is a classification called normal anymore regarding many poeple's family lives. Some of the homelife stories kids have to share on the playground with me can be sad, interesting, inspiring, wonderful, exasperating, etc.......but what is normal anymore......good question! I know you wanted us to think perspective, but I commented literally anyway.

 
At Wednesday, March 01, 2006 3:57:00 PM, Anonymous Teresa M. Left a thought...

Normal,abnormal,average,non-average, functional, dysfunctional...hmmmm...somewhere on "the bell shaped curve". I guess it is all in the perspective of the labeler? Priorities and balance are something we all work with and make decisions about and for me God is the Plumbline for both. Thanks for the comment today!

 
At Wednesday, March 01, 2006 8:42:00 PM, Blogger Jeff H Left a thought...

Sit and play with her and Sarah. Watch some TV. Go take a walk in the park, weather permitting. Go wander through a mall. Go to the library's children's reading room. Get some pictures taken or take them yourself.

Enjoy the gift of God's grace.

 
At Wednesday, March 01, 2006 8:59:00 PM, Blogger Eva Left a thought...

I'm so glad it worked out the way it did to get her central line out! What a blessing.

 
At Thursday, March 02, 2006 4:35:00 AM, Blogger Corry Left a thought...

Enjoy the time you have together. All will fall in place:-)

I am so happy for y'all! God is good!

God's Grace.

 
At Thursday, March 02, 2006 7:59:00 AM, Blogger Jayleigh Left a thought...

God is so good!!!!! Many people feel like they have to just take the dr office at face value when I know for certain that my grandfather was alive for an additional THREE years because of my grandmother's advocating for him. She was amazing.

And you two have been amazing also.

Thank you for this reminder of how we spend time. I have been very seriously considering how I can take a "true sabbath" and I'm still trying to figure how I can fit it in.

But it's one of those "priority" things, isn't it?

**hugs** for all of you!

 
At Thursday, March 02, 2006 1:05:00 PM, Blogger Darlene Left a thought...

You have time to shampoo and condition your hair now, chew and swallow your food, and both slip on and tie your shoes. We bought a 19.00 tent on the weekend and the kids slept in it. Because it's a dome style, we didn't need to peg it to the ground. They have months of play for 19 bucks.

Or save some cash and do what I'm doing right now--sing "Zip a dee do da" with the kids.

 
At Thursday, March 02, 2006 6:00:00 PM, Blogger My Kid's Mom Left a thought...

Hey, you will RELISH each and every day from now on because of all you've been through - I know that our family does. In fact, if things get "too" normal, I start to feel a bit uneasy!

Relax, enjoy yourselves. And I am so glad your doctor got that central line out.

 
At Sunday, March 05, 2006 6:44:00 PM, Blogger *~Tey~* Left a thought...

That's a good point. Quality time with family is important all the time. Every moment is very important. God Bless you!

 

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