Kimmie's Santa Bag

In an earlier post I wrote about how Kimmie moves her stuffed animals from her room to the family room by tossing them down the stairs. This is very effective for the larger ones. She has another method she sometimes uses for the smaller ones. She takes her pillowcase off her pillow and fills it up. We call it her Santa Bag. She fills it up and then gathers the opening closed in her hand and hauls it off.

This last time we didn't bother to carry the pillowcase back upstairs, so she plays with it every night. She gathers her small Care Bears and panda bears, tosses them all in the bag, and then carries it around. When she settles someplace, she dumps them out, plays with them for a while and then loads the bag back up.

We always laugh because it looks so much like an overstuffed Santa bag. When she heard us calling it her Santa bag she was confused. She told us it was Kimmie's bag. Her sister asked her if she was going to throw it over her shoulder. Kimmie tried to lift it up to her shoulder but couldn't quite figure out how to get it over her shoulder.

We enjoy watching her play.

--Mom

Kimmie's best buddy

Kimmie's best buddy is Brown Bear, her teddy bear. He started out as her brother's teddy bear, but whenever he would leave the bear out where Kimmie could get it, she would latch onto it. After a while he would get tired of that and carry his bear back to his room. Eventually he decided he didn't need a teddy bear any more and he gave it to Kimmie. He had never named the bear, but Kimmie named the teddy bear "Brown Bear" after her favorite book, "Brown Bear, Brown Bear, What do you see?" (Eric Carle)

Brown Bear has been Kimmie's faithful companion nearly everywhere she goes. We do not allow her to carry him to school, but he does go to church with us. Sometimes she folds his paws so he can pray.

He always goes to the doctor, the dentist and the hospital with Kimmie. Especially the hospital. He has been to surgery with her a couple times.

Kimmie sleeps with Brown Bear. He is usually her pillow. He is pretty flat now, and we have even had him restuffed once at Build-a-Bear.

Several years ago she took a little red shirt off of one of her Pooh Bears and put it on Brown Bear. He has worn it ever since. When she does take it off, he just doesn't look like himself.

He has taken many baths through the washing machine, but we are almost afraid to wash him anymore. He is getting very delicate. Much of his fur has rubbed off.

Kimmie rocks him to sleep, pats his head and covers him up. She tells us to be quiet. He's sleeping. Kimmie pretends he is Aladdin, the Blue Genie, Danny Phantom and lots of other fun cartoon characters that she likes.

Most of all, Brown Bear gets lots of love. Lots of hugs and kisses.

--Mom

Petite

To say that Kimmie is petite is a bit of an understatement. People are always asking me how old she is. When I answer, 17, their mouths drop open and their eyes grow large. They have a hard time reconciling my answer to the little girl with the teddy bear clutched under her arm.

Kimmie wears clothes from the children's department, and probably always will. Her spine doctor has told us that her growth is complete.

We learned several years ago that Kimmie has a growth hormone deficiency. We chose not to treat the deficiency for several reasons. Our pediatrician did not recommend treatment. He did not see the point of putting her through all the shots. We were also concerned that stimulating growth would create additional spine problems, possibly worsening her scoleosis or increasing tension on her tethered spinal cord.

Kimmie being small has advantages. It is easier for us to take care of her, all of us, Mom, Dad, sister, brother, grandparents. It also allows Dad (who has spoiled her) to continue to carry her upstairs to bed after she has fallen asleep on the couch.

--Mom

Let the little children come

Luke 18:16 says, "But Jesus called the children to him and said, 'Let the little children come to me, and do not hinder them, for the Kingdom of God belongs to such as these.'" (NIV)

I will forever picture Kimmie when I hear or read this verse. She will always come to Jesus as a little child.

--Mom

Sitting at Mommy's Feet

Kimmie is a bit of a Mommy's girl. When she was a baby, she would get fussy and, often, all she needed was for me to sit down and hold her for a while. Sometimes when she gets grumpy now, we think she just needs some time with Mommy.

One of the things she will do when I am in the family room is to pick up her toys, carry them over, and sit down at my feet. Sometimes she gets more toys and brings them over. She can create quite a pile and then sits there on the floor, at Mommy's feet, playing and telling me all that she is pretending.

When I sat down at the computer tonight, she came and sat at my feet. That's what prompted me to write about this today.

When I sit on the couch, sometimes she sits at my feet and other times she sits next to me. When she sits next to me, she will slide over until she is right up against me.

It is a reminder to me that sometimes I need to put the work and chores aside and simply "be" with Kimmie.

--Mom

Just for everyone to know -- Kimmie only does this with Mommy. She likes for someone to be around, but she likes Mommy best.

-- Dad

Butterflies and other scary things

Kimmie is not afraid of very many things. She is wary of some medical items -- bandages, stethoscopes, and blood pressure cuffs are the most notable.

She is also a little shy around animals, although with some coaxing she will pet them. Horses, dogs, goats, even a few cats (if they are not too jumpy). But not butterflies.

On our first trip to San Diego, we went through the butterfly cage at the Zoo. It is a very large enclosure with plenty of space for people, plants, and hundreds of butterflies. It is a rare opportunity to have these beautiful delicate creatures land on head, clothes, fingers -- very special pictures.

While we were walking through, Kimmie was in her stroller, wearing shorts. As I pushed her along through the multi-colored clouds, a butterfly landed on her knee. How cute! I reached for the camera as she began screaming. Remember, Kimmie is highly tactile. And butterflies are still insects with tiny griping hooks on their legs. Apparently she could feel the prickle, and most emphatically did NOT LIKE IT. I shooed it away and got out as quicky as I could.

She likes the idea of butterflies. There is Pooh Bear in a butterfly suit among her collection of stuffed animals. She even has a wonderful Halloween costume that Mom made complete with wings. She will occasionally put them on and flutter around the house. Just keep the real ones far away.

On the same trip we were at Sea World. There is a tank with several dolphins that will come within reaching distance. They seem to like people -- but they are BIG and have beak full of serious teeth. Most people (including me) were at least reluctant to stick our hands in the tank. Dolphins are friendly, but what if they mistook the fingers for tasty sardines?

Kimmie, on the other hand, was ready to simply jump in the tank with them. I kept one hand on her, else she may have tried. No fear, she just reached over and gently patted this 400 pound giant.

Why would she be afraid of a butterfly, and not fear a huge animal with dozens of sharp teeth? Her perspective -- her priorities -- make her focus on the small and immediate while losing track of large and real potential risks. I need to remember that lesson and stay with what is truly important, and let the little things that are merely annoying just fly away.

--Dad

Jesus Loves Me, This I Know

When Kimmie was three and four-years old, she attended a preschool program at our local elementary school. This was a preschool program that was open to any three or four-year old. The school district would also place developmentally delayed children in the class along with extra aides. Kimmie was one of those developmentally delayed children.

The first year, when Kimmie was three, she went just in the morning. The second year, at the teacher's recommendation, she went all day. Going all day gave Kimmie the opportunity for more social interaction with the other children.

Nap-time, however, was a bit of a problem. As I mentioned in an earlier post, Kimmie didn't sleep. She didn't take naps. It became a challenge for the teacher and signing aide to find ways to keep Kimmie occupied during nap-time.

One of the activities that they would sometimes do was review Kimmie's sign vocabulary. We kept a list of all the signs that Kimmie had learned to date. The aide would say the word and Kimmie would show her the sign. This was done to make sure Kimmie didn't lose any of her signing vocabulary.

One day Kimmie and the aide were sitting on Kimmie's nap mat reviewing the list of words/signs. On the next mat was a little girl who's family was of a religious group that did not allow for participation in holiday events or any reference to religious matters. Since this little girl was laying there listening and watching Kimmie and the aide, as the aide went down the list saying each word, she skipped over all the religious words like God, Jesus, Lord, Bible, pray, etc. The aide spoke each word and Kimmie responded with the sign.

After they had gone through the entire list of words, the aide looked at Kimmie. Kimmie looked at the aide and started signing. Very deliberately, without any prompting, she signed each of the words that the aide had skipped: God, Jesus, Lord, Bible, pray, Christ, church, amen . . . The aide, who was a young Christian lady, wasn't sure what to do at that point. Without saying a word she started signing "Jesus loves me, this I know. For the Bible tells me so. Little ones to Him belong. They are weak but He is strong. Yes, Jesus loves me. Yes, Jesus loves me. Yes, Jesus loves me. The Bible tells me so."

When the aide finished signing the song, Kimmie launched herself into the aide's lap, wrapped her arms around the aide's neck and gave her an enormous hug--as if to say, "You know my Jesus, too!"

"Jesus loves me, this I know."

--Mom

Rabbit

A few years ago we were preparing for a yard sale. We were gathering outgrown toys, clothes and other stuff no longer needed. I put with the yard sale items a large stuffed Rabbit, as in Winnie the Pooh's friend Rabbit. You see Kimmie has lots of large stuffed animals, Pooh, Piglet, Tigger, Eeyore, Rabbit, panda, Scooby-doo. They take up a lot of space and I decided that she never plays with Rabbit, so he could go. Dad was not too sure about this idea. He said it broke up the set. Usually he is all for scaling back the toys, but not this time.

We continued to prepare for the sale and I kept Rabbit in the sale items. The day before the sale we moved all the stuff to the living room where we could put it outside quickly the next morning. Kimmie became quite aggitated about all that was going on, but we kept her out of the living room.

After a while, when she continued to be aggitated, we turned her loose to go in and get whatever had her upset. It was like she was on a rescue mission. She put her head down and ran into the living room. She snatched up Rabbit and clutched him under her arm. She pivoted around and ran out of the room, past us, and didn't stop until she was safely in the family room with Rabbit and all her other treasured toys.

We still have Rabbit. We won't try that again. She may not play with him, but his presence, along with many other of her stuffed animals, brings her some comfort and security. That's important, too.

--Mom

Shoestrings

If you have ever been around Kimmie much, you have probably noticed the wad of shoestrings that she carries around with her. (unless you know her from school--we don't let her carry them to school)

Her interest in shoestrings began many years ago. I started it. When Kimmie was five she was in kindergarten. The class she was in didn't work out very well. Eventually we took her out of school for about a year and I homeschooled her while we tried to find an appropriate class. As I searched for activities that would develop different skills, I found this idea of using peg board and shoestrings to practice lacing and creating designs. Kimmie wasn't much interested in working the laces through the holes on the board, but she became obsessed with unlacing the board. I would string the laces every which way through the holes, criss-crossing them and changing direction. She would work diligently until all the laces were free of the board. It became a fine motor and problem solving activity.

Eventually we discarded the board, but she had become very attached to the shoestrings. She usually has four or five that have become her favorites. She will carry these around and fiddle with them. She will find the exact center of each and tie exactly the same number of knots in each, usually two or three. Then she will line up the knots in her hand. Kimmie is very tactile. The knots in each string have to match, they have to feel the same size and length, or she will rework them.

When we are headed to church we will usually try to get the shoestrings away from her so we can tie knots in them on the way. This keeps her busy for a while working to untie them. While she is busy with one, we will try to sneak another away from her to tie more knots in it. If she catches us, she will not let us have the string. It turns into a game as we try to out-maneuver her and get the shoestrings. Sometimes the whole family gets involved--Grandma, Grandpa, sister, Mom, Dad . . .

Kimmie is very tactile and she can be very picky about the strings. They must be flat shoestrings not round. No metallic threads in them. Not too slick. They must also be solid colors. Once she has played with one for a while she knows the feel of it and it cannot be replaced with another the same color, not even the matching one that came in the same package. She can tell the difference.

--Mom

Pandas

Kimmie loves pandas. She has a nice little collection of stuffed ones, and she loves to wear her panda pajamas.

In 2000 we visited San Diego and went to the zoo. This was our first time to see real pandas. Kimmie was 8. She ran in a gift store and wrapped her arms around a stuffed panda that was almost as big as she was. Of course we hauled that panda home with us. It became her sister's carry-on when we boarded the plane. Her sister was 5 at the time and she carried it through the airports for us. We still have that panda.

In 2006 we visited San Diego a second time. The only animals Kimmie was interested in seeing at the zoo were the pandas. We pushed her wheelchair over to the rail where she could sit and watch the pandas. Actually, she didn't really watch them all that much. She was simply content just to "be" wth the pandas. Fortunately it was not busy and we were able to stay there for a while.

We visited the pandas twice that day so she could sit contentedly and "be" with her friends.

--Mom

Sea of Toys

We live in a sea of toys. Since Kimmie was just a little tiny girl she has always been happiest when surrounded by all her toys. It is not enough that she can see them; they have to be all around her on the floor. Once she has the floor covered with her toys, then she is content.

We thought, hoped, she would outgrow this, but, at 17, she still likes to sit on the floor in the middle of all her toys.

It's not enough to get out her favorites, or just the ones she is going to play with right now. No, all the toys have to be out of their containers and strewn on the floor around her.

To control the mess we try to keep a few toys in each room. That works for a while, but eventually she starts carrying them all to the family room. She will go up to her room, carry stuffed animals to the top of the stairs, then throw them down. When she has them all at the bottom of the stairs, she comes down and carries them to the door of the family room where she tosses them in. When the floor is completely covered she sits down in the middle of the mess and plays contentedly.

We all take comfort in having our favorite things nearby. Kimmie just illustrates this in an extreme way. In the big scheme of things it is just a small inconvenience that is worth the bother if it makes her feel safe and secure.

--Mom

Jesus Heart

In 2004 Kimmie began signing "Jesus heart". She would sign this at random times with no prompting. There was always a smile on her face that radiated a sense of joy and peace and contentment. In her eyes you could see that she was far away in a special place.

I tried to talk to her about it, but it was difficult to find the right words. Once I asked her if she had Jesus in her heart. The idea of having something IN her seemed to scare her. I never used that particular phrase again. I would usually just ask her if she had a "Jesus heart." Sometimes she would say "yes" and sometimes she would say "no". But it always brought her back from the far-away place that caused her face to glow.

Eventually one evening as I was giving her a bath I started talking to her in very simple terms about Jesus. I explained to her that sin was the things we do that make God sad, the things we do that hurt others. I asked her if she understood what sin was. She nodded her head "yes". I talked to her about Jesus and how he came to help us. I asked her if she understood about Jesus. She nodded her head. I explained to her that we need to pray and tell God that we are sorry for the things we have done that made him sad. And that we need to ask Jesus to be with us always to help us do the right thing. I asked her if she understood and she nodded her head "yes". By this time we were just finishing getting her pajamas on. She immediately ran out of the bathroom, leaned against the bed, folded her hands, and laid her face down on the bed. I went over and knelt next to her wondering what I should do next. I started silently praying for her. Shortly she raised her head up, signed "Amen", and smiled her beautiful, radiant smile.

--Mom

Hugs

Kimmie is a wonderful hugger -- world class by any measure. She is generous with her hugs too. They are so good that people who become familiar with her will maneuver to get in her line of sight, just for a shot at a hug.

One very severe Type A gentleman at our church learned that he could get a hug if he was at her level, instead of reaching down. Most Sundays, this stern proud man would hit his knees and hold out his arms for her. He was not ashamed or embarrassed either, he just knew a good thing.

She is often in her own world when we are shopping. Mostly she looks at the merchandise, especially toys, and lets the other shoppers pass unnoticed. Occasionally though, her hug radar goes to full alert. Somehow she knows, someone nearby NEEDS A HUG. We have never found a pattern. She will make a bee-line; we usually intercept her and ask the person if she may hug them.

A passing soldier in uniform, a young African-American man working the cash register, and a middle aged woman who appeared upper-middle class -- all were beneficiaries of her hugs. Mostly they are amused, sometimes awkwardly accepting. One lady simply started crying, very gently, and said "I really needed a hug. How did she know?"

I have no idea; it is simply her gift that she shares according to her own rules and reasons. I am just glad I get to be close when the hugs overflow and have to go to someone.

-- Dad

Hearing

Since Kimmie uses sign to communicate, many people assume that she is deaf.

When Kimmie was about 18 months old the doctors had an auditory brainstem response test done to check her hearing. At that time they decided that Kimmie had a moderate to severe hearing loss. She began wearing hearing aids. She wore the hearing aids for about four years. When she was five we decided the hearing aids were no longer necessary. After the auditory brainstem response test, I took her periodically for a hearing test in a soundproof booth. Each time she was tested in the booth her hearing had improved. The last time I took her it showed only a marginal hearing loss that put her hearing in the normal range.

Kimmie uses sign because she cannot produce speech. She has had speech therapy since she was 1 year of age, but Kimmie has never been able to make sounds resembling speech. The speech therapists have said that she doesn't move enough air over her vocal chords. The geneticist said that her inability to speak was probably a neurological problem.

Kimmie has become very good at signing.

--Mom

Siblings

Our immediate family consists of Mom, Dad, Kimmie, Kimmie's brother and Kimmie's sister. Kimmie's brother is two years older, and her sister is three years younger. As of this writing Kimmie is 17, her brother is 19 and her sister is 14.

We are fortunate that Kimmie's brother and sister both love Kimmie and hold her in a special place in their hearts. They are always willing to help with her. They babysit. They get her off the school bus. They entertain her. When they are grumpy with everyone else, they are still kind to Kimmie and she can make them smile.

--Mom

Diagnosis

We are sometimes asked what Kimmie's diagnosis is. She does not have a diagnosis.

We know that somewhere in her genetic makeup there is a chromosome that is either missing, or extra, or backwards, or in the wrong spot. We just don't know exactly which one is affected.

When Kimmie was small we took her to a geneticist. She was tested for a few disorders, but the tests came back negative. Over the years that we took her to the geneticist, it seemed like we were not receiving much benefit from these appointments. They seemed to be more for the doctor's benefit as Kimmie gave him someone different to study. Eventually the option of having fewer appointments outweighed the desire to put a name to Kimmie's disorder. After all for many years we were inundated with appointments--doctor appointments, allergy shots, speech therapy, physical therapy, occupational therapy, school meetings. . .

--Mom

Wrapped up in Mommy's love

Kimmie has never been a morning person. When she was little, say 10 or 12 and younger, she would curl up in a ball in my lap while we were waiting for her school bus to come. Sometimes she would almost fall back asleep. She could curl up into such a small ball that I could surround her with my hands and arms. I would hold her and tell her that she was "all wrapped up in Mommy's arms, all wrapped up in Mommy's love." There was also the sense of surrounding her to protect her, to protect her from the world, from people who might not be nice to her, and from difficulties she might face that day at school.

--Mom