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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Sunday, March 18, 2007



Rebekah is Getting Better, Some Stories

We've been laying pretty low at home the last part of the week - no school and no therapies. Rebekah has had a low grade fever on and off, but nothing like on Tuesday. She does seem to be feeling better. Tomorrow she has a couple of therapies and Tuesday a couple of doctor appointments. I'm hoping that we will be able to make them all. Both girls have been doing some coughing, especially at night.

Last night, Sarah woke up several time inconsolable. I'm not sure what was going on. I finally got her to take some motrin and she seemed to settle down and go back to sleep. Each time she woke up screaming, she woke her sister up, too. Then I had two girls who wanted Mommy to rock them and snuggle with them. It was not a fun evening.

I promised some stories, so here they are.

A couple of weeks ago, we woke up to a very light dusting of snow. When the girls saw it, they called it "baby snow". A few days later, we had a pretty good coating of snow. They called it "baby snow" too. We explained that it was more than just “baby snow”. Anything "little" they call "baby". Yesterday, it was a small dog (but not a puppy).

The girls’ pull-ups have princesses on them. In the package are generally two patterns, one with 3 princesses and one that has only one princess. Lately, they have been Cinderella. Both girls call her "blue princess" because she is the one wearing the blue dress. They have to have a "blue princess" pull-up and not the other one. So we end up going through the whole stack pulling out all the "blue princess" pull-ups and wearing them until there are no more and then going through the others.

The other day, while we were sitting at the table eating, the girls were telling me how their grandmas make them certain foods. Macaroni and Cheese is not just Macaroni and Cheese, but rather "Grandma Macaroni and Cheese". Chocolate chips are "Grandma Chocolate Chips" and Vanilla Wafers are "Grandma cookies". Those are all Grandma A things. Then they were telling me that Grandma C makes them Chocolate Milk. I know they told me something that was a Grandma M item, I just can’t remember what it was.

When they eat bananas, they have to eat them like Boots eats them. Boots is Dora’s best friend – a monkey. They need them either whole or cut in half (in or out of the peel), but not in slices. Speaking of Dora and Boots, often Sarah and even Rebekah will say that they want to watch Boots on TV. Sometimes, I think Boots is more important than Dora.

String cheese usually has to be in strings and they don’t want to eat bites of it or have it cut into rounds. Some of the time, they want their stick cheese in strings (thin cuts as if strings).

Daddy has been singing to the girls. He sings "Two little monkeys jumping on the bed, one fell off and bumped her" and then waits for them to answer "head", although Sarah lately has been saying "knee". I’m not sure why. Then daddy sings "Mama called the doctor and the doctor said" and waits. Sarah pipes up "no more monkeys jumping on the bed" and sometimes Rebekah will try to say it, too. Sarah has all the syllables, but not all the sounds. You have to know what she’s trying to say, but it is really cute.

If I call Sarah "my little girl", she is usually pretty prompt in telling me "Me not little girl anymore, mama, me big girl." That is, of course, unless she wants me to pick her up and carry her around like a baby, then she says "but me little girl mama."

They have most of their colors down (blue, red, yellow, purple, green, brown, white, and black) and many of their animal noises (bird, cow, dog, kitty, frog, horse, sheep, lion, and rooster). They also know that a train goes "chug a chug a choo choo" and that they can see one from our back window. When Sarah says "chuwachuwa choochoo" her hand is moving like pulling on the whistle.

When we go to Horse Riding, as soon as they see the barn they start saying "neigh" - well it sounds more like "knee" but they mean "neigh". Then they start looking for "Jenny’s car". Jenny is Rebekah’s horse teacher. If they can’t find Jenny’s car, then it is "uh oh" – they know that means a problem. Rebekah, also, looks for Jenny’s dog in her car. She likes to see Twila (the dog) whenever she can.

Rebekah’s horse riding therapy includes some physical therapy aspects. She will do a "tall tree" reaching her hands up to the sky. Then she will do an "airplane" with her arms out to the sides. Sarah likes to do the exercises with her. At home, we’ve started to do "short tree" with elbows at the sides and hands up by the head. Jenny thought that was pretty funny. Sarah doesn't like to choose which motion she will do - tall tree, airplane or short tree. If Mommy asks her to do one, she will usually opt for a different one.

Rebekah is really enjoying her horse riding. She does really well with getting everything together to ride the horse (helmet, saddle, pad, blanket, girth, reins and brushes). Sarah always wants to help, too. She usually carries the girth or the brushes or the reins. Rebekah helps brush the horse and get the saddle and everything on the horse and lead the horse over to the stairs to climb on.

3 Shared:

At Monday, March 19, 2007 5:48:00 AM, Anonymous Pamela Earley Left a thought...

Big smiles over here as I envision the girls during the stories. As my girls are older - 9 & 13 (how DID that happen???) I realize that we still use a lot of their childhood mispronunciations and sayings in our vocabulary today - i.e. - Nanny jelly, aunt Debbie cookies, quiet dogs (hush puppies) and so forth. It is funny when you use these idioms around others and then you get to explain and tell the stories. Keep those things in your daily lives and use their words throughout. It makes for fun memories later. Just remember to use the right words with strangers! :-) The waitresses and waiters look at you funny when you order 'pinch pies' to go on the side of your meal. They often get 'pwustwated.' :-) Enjoy this time with them - it is wonderful.

 
At Monday, March 19, 2007 2:32:00 PM, Blogger Eva Left a thought...

It's nice to hear the fun stories. Thanks. :)

 
At Tuesday, March 20, 2007 11:04:00 PM, Blogger Angela Left a thought...

i was just diagnosed with ewings sarcoma 3 months ago it is in my leg and neck i am very scared i am 14 the blogs that i wrote were some of the most inspiring pieces i have read if you had time i wold like to write to you my email is mrpkhommie2@yahoo.com
sincerly
Angela O'Laskey

 

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