I wonder where she's going?

Kenzie "snuck out" of the house while I was loading her chair into the car yesterday. I often wonder, if left undisturbed, where would she go? When I meet my genie in a bottle and am granted three wishes these are what they would be: 1)To live in Kenzie's brain for a day. I want to know what she thinks and HOW she thinks. Her receptive verbal skills are very good and I know all the head-hitting she does is directly linked to her inability to tell us what she wants and needs. 2) To get a hug from Kenzie. She is so tactically defensive she is unable to give a hug. We can hug her, she gets lots of hugs, but I've never received a real squeeze from her. This never occurred to me until I had A and I was given real squishy hugs from her. 3) If my husband and I die first, someone really wonderful will take care of Mackenzie (tears streaming now!). This, by far, is my very greatest wish!

Happy Birthday Grandpa Jim!!

This picture was taken in 2003. Kenzie has a few people in her life that she absolutely adores. Grandpa Jim is one of them and at the top of her list of favorites. When this picture was taken, we surprised her with his visit. She was waking up from a nap when he walked in to say hello. Her expression is priceless! I look at this picture so often as a reminder of pure joy!

Such a struggle she's been having at school. She attends a typical public school, well, I wouldn't call it entirely typical. I hear so many horrible stories from other parents in our area about their experiences and I count myself lucky to not have had such bad ones. I've always considered myself someone who truly trusts her gut instincts about things. When we went to visit what would become her new school I had a good feeling about it. Kenzie was in a school with all special needs kids for 2 years of preschool and kindergarten. When it came time to consider 1st grade I felt we needed to move her. The old school wasn't bad but I knew Kenzie would be so much happier around typical kids. I had many nights of sleeplessness about moving her, but something told me to do it, and I've been grateful ever since. Her struggles in the last few weeks have come from CSAP testing. She doesn't take them but it completely disrupts her and her classmates normal routines. She is also sent off, away from the typical classroom, where she loves the other kids, so that they can be tested without disruption. This is murder for our little girl who apparently has also developed a bit of a crush on one of her classmates. I know the next few weeks of school will be filled with disruptions, I just hope she'll also stop herself long enough to enjoy what's left before summer break. (more on that later!)

We love therapeutic riding!!!

I am a firm believer in the miracles of therapeutic riding. Kenzie was so thrilled to arrive at the farm and see the horses. When we unloaded and were waiting for Chocolate Chip to arrive she was pointing and clapping with anticipation. This was one of the moments (there are many) that she really got it...she was completely there, in the moment, and thrilled. There are so many moments that, as a mother, I am so excited for her, and she just isn't there. Whether it's because of pain, fatigue or over-stimulation, she often misses the joys in life. Thankfully, yesterday wasn't one of them!

Curious?

Among the many mysteries that Kenzie continues to stump us with is the SIB of head hitting. The velocity with which she hits herself has got to hurt! We use a helmet when it gets really bad but in public I always feel sad that other kids stare at her. I try to laugh it off by saying "her mom is a really bad wheelchair driver" if a full explanation isn't called for. We have tried every conceivable tactic to change the behavior. If anyone has had success "displacing" this I would love to hear about it!

Four Eyes!

This afternoon Kenzie was home with B and me. I looked down at the ground and realized I had four of the most beautiful eyes looking up at me! Both sets were looking expectantly and with a purity that you don't see everyday. I was feeling silly so I did a quick little song and dance for them and in a moment we were all in half with giggles. It was a terribly gloomy day but somehow the room as lit more brightly for a minute.

I started this blog 2 years ago...has it really been that long ago? There is so much rattling around in my brain I don't know where to start. We've even added another member (2 members if you count the dog) to our family!

I have abandoned all hope of naming Kenzie's "genetic disorder." Of course, I've done this before and just when I do someone asks me what her diagnosis is and I stammer and stutter, finally, answering she's undiagnosed. When I get home I take out my medical rolodex and start reintroducing myself to all of the specialists we've talked to in the past. It usually goes something like this: "Remember me, I'm the crazy mom that is in dire need of a lable, that likely I don't really want, to put on my child." They say they'll pull the file, days/weeks later I get a phone call back that basically says: "we don't have any new ideas now but we'll keep thinking about it." I answer....."Right" defeated again. But for now, and in an effort to celebrate spring and summer with a cluster of kids, I abandon the search. Nothing is likely to change before fall.

B finding his toes for the first time!

The introduction of a new baby to our family has absolutely charmed Miss Mackenzie. She is smitten with her baby brother and makes certain I attend to his every need whenever he makes a peep. She will sit outside B's door and wait until he makes a sound then either bang the door or calls out to me with her ba-ba-ba verbalizations. Usually, mostly, the banging part.

I may be one of the few citizens thankful to congress for increasing the length of daylight savings time. Although, my body clock has changed, without the understanding of time, Kenzie's has not! Which means our house gets an extra hour of sleep in the morning than before the time change. Rather than 4 am wake-up calls, blessedly it is 5 a.m. when Kenzie is up and out of bed.