Reality vs The Idea

All year long Kimmie will talk about Halloween. She will talk about what costume she wants to wear in great detail. She will talk about carrying her purple pumpkin basket, knocking on doors and signing trick-or-treat. Sometimes she is going to be a butterfly. Sometimes the Blue Genie. Sometimes Aladdin. But when Halloween arrives, Kimmie runs to the family room in the back of the house and won't go near the door, won't have anything to do with a costume, and signs "no" to everything.

We say that she likes the idea of Halloween, but not the reality of it.

She did go out trick-or-treating when she was younger, but it was always a bit difficult for her. One, she was scared of the other kids in costumes. Two, it was hard for her to see where to walk and whether the surface was even or uneven or steps. Three, the decorations scared her. Four, she was very slow getting around and would almost get trampled by kids who were running.

There are other examples of Kimmie liking the idea of something, but not the reality. Take peanut butter and jelly sandwiches . . . Kimmie talks about them all the time at school, but in reality, she does not like the texture of bread, nor does she like the texture of peanut butter.

She's an interesting girl.

--Mom

Sweet, S-W-E-E-T

Kimmie's favorite word right now is "sweet". She will sign "sweet" and then fingerspell it. She never signs just the word. She has a few words like this that she always has to fingerspell after signing the word. "Free" is one, "Free, F-R-E-E." Usually used in the context of "rub the gold lamp, free F-R-E-E the Blue Genie."

Right now Kimmie is big on Gwen, a character from the Ben10 cartoon. "Sweet S-W-E-E-T girl G-W-E-N." Before Gwen it was the girl characters on Teen Titans. "Sweet S-W-E-E-T girl Starfire." "Sweet S-W-E-E-T girl R-A-V-E-N." Daddy took exception with Raven being a sweet girl. He says she has anger management issues, but Kimmie thinks she's sweet.

We are always telling Kimmie that she is sweet, but she just shakes her head no.

--Mom

How to Get the Best Hugs

Kimmie has quite the imagination. Every morning she tells me who she is pretending to be and then I ask, "Who am I?" Most mornings she is Aladdin, and I am the Blue Genie. The Blue Genie and Aladdin always have to hug, and they are the best hugs. If you want a good hug, tell Kimmie you are pretending to be the Blue Genie.

Sometimes I'm Shaggy or she's Shaggy. That usually results in a pretty good hug.

Sometimes she's Gwen (from Ben10), and I'm Ben10. Again, they have to hug.

But the best hugs are Blue Genie hugs.

Helping Kimmie with her breakfast is rough . . . all that hugging! It's a great way to start the day!

--Mom

Eating Machine

Kimmie has turned into quite a little eating machine. She has gained back all the weight she lost during her surgeries plus a couple pounds more.

I counted up and on Sunday she had meals or snacks eight times! Breakfast, a snack during Sunday School, lunch, a hotdog at the zoo, a snack when we arrived home from the zoo, supper, a snack with her medicine, and then popcorn before she went to sleep.

--Mom

Invisibility cloak

Kimmie has been doing a little routine at bath time. She is never eager to leave her toys for a bath, and had usually fussed at us for interrupting.

One evening she was a bit happier than usual, and she started giggling as we went upstairs. She sat down, still giggling, while I went into her room to get fresh pajamas. She giggled even harder while I was gone, so I knew she was up to something.

When I walked back in the bathroom, she had gotten a washcloth from a drawer and spread it over her head. She laughed out loud, and ducked her head in that way that always means "you can't see me".

She did this more often, now it is almost every bath time. And she usually picks a blue or aqua washcloth.

We asked her tonight if she is invisible when she has the washcloth over her head. She looked a little confused, and then signed"yes". But her giggle will always give her away.

Dad

Brown Bear's Adventure

Brown Bear, for those who don't know, is Kimmie's teddy bear. Brown Bear was big brother's teddy bear first. Kimmie loved Brown Bear so much that big brother let her have him many, many years ago. Kimmie named him Brown Bear after her favorite book when she was little, "Brown Bear, Brown Bear what do you see?" (Eric Carle)

Brown Bear is well loved. You can tell by the bald spots. He goes most places with Kimmie. He's even been through surgery with her, more than once. We always make sure we have him when going to a doctor.

Yesterday when we went to the doctor with Kimmie, we parked in the parking garage, rode the elevator to Level 3 so we could walk across the pedway to the office building. Once we arrived in the office building we took another elevator to the floor we needed.

When we were leaving the doctor's office we rode the elevator back to the third floor so we could walk across the pedway again, back to the parking garage. A woman on the elevator was talking to us and exited on the third floor with us. As I was talking to he, Kimmie walked over to the balcony overlooking the lobby and looked down at the fountain. As I continued talking with the woman, it crossed my mind that Kimmie might drop Brown Bear over the rail.

I glanced at Kimmie standing by the rail, she was fine, and then I turned back to the woman as we chatted. When I glanced back at Kimmie she was walking towards me with empty hands. Sure enough, she had dropped Brown Bear.

The woman and I rushed over to the rail and looked down. There lay Brown Bear. Fortunately she had dropped him rather than tossed him, or he might have ended up in the fountain.

BUT, as we looked down at Brown Bear, a lady picked him up and was walking off with him. As this lady was walking off with Brown Bear I started calling down to her, "Lady with the bear, wait, come back, lady with the bear . . . ". The woman I had been talking to started calling down to her as well, "Look up. Look up." I had no idea where the lady was going with Brown Bear.

She did stop and look up. (Whew!) I asked her to put him back and we'd come get him. She asked what floor we were on, said she was coming up and would bring him to us. A minute later the elevator doors opened, she stepped off, handed me Brown Bear and stepped back on the elevator. It happened so fast I hope I said "thank you," I think I did.

And Brown Bear returned to Kimmie's loving arms.

We have so much fun (well, that might be an overstatement) and so many adventures going to the doctors. We never know what might happen, who we will meet, who Kimmie will decide to hug, how people will respond to her . . .

--Mom

New Doctor

In January we took Kimmie to a new doctor. Well, technically she's not a new doctor since we did see her once before, about 4 or 5 years ago.

As usual Kimmie was quite stressed about a doctor appointment, especially since she couldn't remember and didn't know what to expect. We were taken into the doctor's office, rather than an exam room, which calmed Kimmie down.

We were chatting with the doctor when suddenly she interrupted herself to say, "She's signing!"

We responded that, yes, Kimmie signs, that's her means of communication.

She wanted to know if Kimmie was trying to tell us something. I turned and watched Kimmie for a minute and responded, "No, she's just talking to herself." (Kimmie does that a lot. She retreats into her own world and signs about it. Sometimes it's about Aladdin. Sometimes Eeyore. Sometimes she's a butterfly flying through the sky. . . .)

We went on with our discussion. A little while later she interrupted herself again and said, "She is just adorable!"

Today we went back to this doctor for a follow-up. She had a "student doctor" with her and twice she turned to the student doctor and said, "Isn't she adorable?"

I think this doctor is a keeper.

--Mom

Green Star Wars Sword!

OH, NO! Evidently there is a GREEN Star Wars light saber sword.

At least there is a commercial with a green one in it. I saw it the other day while sitting next to Kimmie. I gasped. She poked me and signed "green". Her sister laughed.

Maybe we won't be able to find a green one at our stores? Maybe I can keep her out of the toy section?

Oh, well. She does play with them.

My little collector.

If you have no idea what I'm talking about, see the February 16, 2010 post titled "Kimmie's New Collection."

--Mom

WDW 2010

That's where we're headed on our next vacation, Walt Disney World. Kimmie kept asking and we decided to take her.

We figured she's had a rough year. She could use something fun to replace all those bad memories. Everytime she starts talking about the hospital, we talk about Disney World.

She wants to hug Aladdin and the Blue Genie. She wants to shop for Aladdin playing cards and an Aladdin coloring book. I sure hope they have those two things or she may be one MAD little girl. There's suppose to be an Aladdin store near the Magic Carpet ride. We'll see.

--Mom

Sleep

Some prayers must have been said after my last post about Kimmie not sleeping. Since then, she has slept through the night 3 times, 3 times in one week. Not consecutive nights, but that's ok. It's a start.

Amazing how much that helps us feel better. Like we've come out of a dense fog.

--Mom

4-Months Post-Surgery

Tomorrow it will be four months since Kimmie's scoliosis surgery.

I would like to be able to say we are all fully recovered and everyone is doing great. Unfortunately, that's not entirely the case--for the most part, that is true.

Kimmie's back is straight. Her shoulder blades are almost in the correct positions now. She's only missed one day of school since the beginning of January.

However, she continues to be up in the night, often several times a night. Or one of us has to sleep with her. Or she wants to sleep on the couch, and one of us sleeps on the other end of the sectional.

She tells us her back hurts and continues to want it rubbed, almost more than before the surgery.

We are always analyzing and trying to figure out why. And trying different things to see if she sleeps better. It's all a guessing game since she can't tell us much. But we've kinda stopped the analyzing and have just accepted that it's going to take her a long time to get over the trauma of the two surgeries.

One of the scary things is that she tells us that on Thursday (the day of the scoliosis surgery) the doctor put brown medicine on her back. We didn't think she was suppose to be able to remember anything from the operating room. If she remembers that, what else does she remember that she cannot express? It's pretty understandable that she could be having lots of bad dreams and fears upon awakening in the night.

It would be nice to get a few nights of uninterrupted sleep, but for now Kimmie needs a lot of comfort and reassurance that we are there.

--Mom

Big Sister or Little Sister

The other day Kimmie's sister was helping with her. I said to Kimmie, "Is your big sister taking good care of you?" Then I thought about that and said to Kimmie, "Is your little sister taking good care of you?"

It's always a dilemma. Is Bethany the "big sister" because she's a foot taller than Kimmie? Or is Bethany the "little sister" because she's three years younger than Kimmie?

Bethany admits that she sometimes forgets that she's the youngest. When people ask her, she often stumbles over her answer.

I told Bethany, let's settle this. We'll ask Kimmie if you are the "big sister" or the "little sister." So we did.

Now it is all settled. According to Kimmie, Bethany is her big sister.

--Mom

Kimmie's New Collection

I've mentioned before that Kimmie is a collector. For a while it was Care Bears. She would pick a color and we would have to search high and low for that color Care Bear. As soon as she had that one she would pick another color. We were saved from that obsession when they were taken off the market. But there's only a couple of them that we are missing.

Several months ago Kimmie came up with something new she wanted. A Star Wars light saber sword. I looked at them in the store and they are about four feet long. Almost as long as Kimmie is tall. Why do they make these things so long? Kids could do some real damage. I was looking for one much shorter, but the short ones only come in a set with a long one.

Anyway. Kimmie spotted the set with the short and long one when she was at the store with me one day. She jumped out of the cart (as in the bench seat at the back of an extra long cart--NOT the basket part of the cart, that's a scary thought), grabbed the box and put it under her arm. In other words, nobody's getting this away from her without a fight (or screaming fit). So she became the proud owner of a set of Star Wars light saber swords that light up, and the long one makes noise. Blue light saber swords. They also had red ones on the shelf.

Well, she enjoyed the blue ones for several months, and then she started in with "red". So now we have two sets of light saber swords. She especially enjoys holding the short ones and having one for each hand. It takes two hands for her to handle the long ones.

When she has the short ones in each hand it looks like she might be ready to direct airport traffic, or play the drums, or direct a music and light show.

Thankfully, I have not seen any other colors but red and blue.

--Mom

Kimmie's New Chair

After Kimmie's scoliosis surgery it became apparent that we really needed to find her a chair that fit her small size. When she sits on the couch, she is just perched on the front edge. If she leans back, she looks terribly uncomfortable and awkward. Mostly she lays on the couch because sitting is not comfortable.

I was skeptical that we would find something that would fit her. It seemed like all the children's furniture that I had seen was sized more for preschoolers rather than maybe an eight to ten year-old.

We were pleasantly surprised to find, at the second store we went to, a chair that fits Kimmie perfectly. And it matches the family room. It's not going to win any style awards, but it's not hideous either.

At first she wasn't sure what to make of it, but day after day she would sit in it more and more. Now, it is usually the first place she goes to sit. She may eventually get down on the floor to play, but usually she sits in her chair first.

When she plays on the Playstation, she sits in her chair. When there is a TV show on that she really wants to see, she usually sits in her chair. It helps that her chair is closer to the TV.

One of the best purchases we've ever made.

--Mom

Just Perfect

"You are worthy, our Lord and God,
to receive glory and honor and power,
for you created all things,
and by your will they were created
and have their being."
Revelation 4:11

I love verses like this one. I always think of Kimmie.

God created her just the way He wanted her to be.

She may not fit society's standards, but that's ok, because she's just the way God intended her to be.

And we think she's just perfect.

Ok, maybe there are some things she could improve on . . . . . . like everyone else, but you know what I mean . . . . . . she doesn't need to be fixed or healed, she's perfect just the way she is.

After all, she doesn't need to be able to talk for God to know what's in her heart. And she doesn't need to be able to multiply and divide to touch another person's heart with her smile or her hug or her laugh.

Just perfect.

--Mom

The Panda Mask

Kimberly is in art right now at school. We weren't sure how this would go since she really cannot use sharp tools and is always sticking her fingers in everything. But, she actually seems to be doing well in art.

She is especially proud of the panda mask she made. Evidentally paper mache is right up her alley. Something she can get her hands in.

She carried the panda mask home the other day and showed it to everyone. Her teacher observed that it looked like something you'd buy in a store. Not sure I'd go that far, but it is really nicely done.

She likes to put it up over her face, although she can't see out since she wouldn't let them put holes in eyes. She carries it around the house, hugging on it. When she stops playing with it, we'll probably hang it in her room. It's definitely a keeper.

--Mom

Adult Day Care

A few weeks ago we looked at another adult day program. This one seemed to have a better program and a smaller client to staff ratio (smaller than the last place we tried--the one that told us not to bring her back after three days. She required more supervision than they could provide.)

We are going to see if this place will have room for Kimmie over the summer. Hopefully we'll get our foot in the door for year-round when Kimmie finishes school in two years.

The one thing that always strikes me when we tour adult day programs is that they are adults. It is so hard for us to think of Kimmie as an adult. She's such a "little" girl in so many ways--her toys, her interests, her size.

Sometimes I wonder if she will fit in. But she's with adults at church and she does ok. She's actually more sociable with adults, even developmentally disabled adults, than she is with youth or children.

A new phase for us.

--Mom

What a Day!

What a day.

Took me an hour and ten minutes to drive to work. A drive that is normally 10-12 minutes. Hadn't even gotten my coat off when Kimmie's teacher called. Kimmie had picked her nose until it bled and bled and bled. She (Kimmie) was hysterical.

Fortunately Kimmie calmed down while I talked to her teacher, and I didn't have to go back out on the ice to get her.

And we have ended the day with another major nosebleed, right at bedtime. Hope we can get some sleep tonight.

--Mom

Baseball

I've written about how cute Kimmie is running around with her football under her right arm and her left arm out in front to knock down anyone in her way. Since I've written about football, I thought I should write about baseball. Baseball is actually her favorite sport.

She gets her bat and she gets into position to bat. Amazingly, the part of baseball that she is the best at is working to dig a hole for her back foot to rest in while she is batting. She works and works her foot attempting to dig a hole in the family room rug. We're not sure how or why she fixated on this goofy, idiosyncratic part of batting, but she spends most of her time working her foot on the rug. I suppose she has seen this on television, but we don't watch baseball very often.

When she finally "swings" (not sure you can really call what she does a swing, but she does move the bat) at the imaginary ball, then she has to stop and tell us that she has hit the ball. She drops the bat and runs. Her running is more of a back and forth pattern rather than a circle-the-bases type movement. Sometimes in the middle of her running the bases she catches the ball, stops and declares herself the winner.

I don't think she quite understands that one team bats and the other team catches the ball, and then they switch.

But she sure is cute and funny.

--Mom

PS. She received a full size football for Christmas. She thinks she's really big now when she plays. Her little arm sticks almost straight out with the bigger ball under it.

Perspective

I think I've written something like this before, but it bears repeating.

One of the benefits of spending time at the children's hospital is the perspective it gives us about our lives. As big as the surgeries felt to us, they did not seem so big when we looked into the faces of other families at the hospital dealing with so much more.

Kimmie's surgeries were a rough time we had to get through, but once through, we were pretty sure it would be something that we could put behind us. Some of the families we met at the hospital were facing challenges that may never be resolved.

We were especially touched by the little boy in ICU in the bed next to Kimmie. He had just celebrated his 4th birthday, in ICU. He, and his parents, had been in the hospital, mostly in ICU, for 31 days. That's right, 31 days, an entire month. We didn't get the whole story, just bits and pieces. Evidentally he collapsed while running, was revived and brought to the hospital. I almost felt guilty when we were moved out of ICU after just 24 hours, knowing that Kimmie was quickly recovering and in a matter of days we would be home and life would return to our normal routine. Their lives will probably never return to what was normal before.

All we have to do is take our eyes off ourselves and look around, and we are reminded of how lucky and fortunate we are.

--Mom