Friends,
About a year ago, Elizabeth entered into a pretty hard regimen of physical therapy with a lovely lady named Bo. Elizabeth had been doing physical therapy before this, but Bo was different. She had a new outlook on Elizabeth. She came in and immediately began to challenge Elizabeth in many ways. She knew all the diagnoses and limitations that Elizabeth's conditions presented. She was very experienced at working with many different kinds of kids with physcial limitations and saw Elizabeth as a challenge--mainly because so little was known about her diagnosis and no one knew what effects this hole of knowledge would have on how Elizabeth would react to different methods. And, on that day last year, Bo was presented with quite a picture.
You see, Elizabeth's beautiful brain has been built by God in a very unique way. And that unique structure causes certain physical manifestations. Let me explain a bit:
First off, Elizabeth does not have a corpus callosum, which is the large bundle of nerves that connect the left and right hemispheres of the brain. The corpus callosum is basically a neural "bridge" that allows the two sides of the brain to communicate with each other. Elizabeth does not have this bridge to allow her right side and left side of her brain to communicate. This is problematic physcially because, in E's case, her left hand literally doesn't know what her right hand is doing. So, basic things like walking, standing, and even clapping her hands is almost impossible as it requires coordination between the two sides to accomplish. Plus, if you were to reach with your left hand and try to cross your chest to your right side of your body, this would require a "cross-body" movement and would require communication between the two sides of the hemispheres of the brain. Also, it can affect how her eyes can track something moving from left to right. It is akin to basically having two independent brains controlling one side of the body each and trying to get things coordinated. It also causes severe seizures and developmental problems. So, as a result of the wonderful and perfect way God made Elizabeth, the thought of coordinated steps with both feet is nearly impossible. There have been some studies that say that some neural pathways can be "built" between the hemispheres but it would never ever approach the mass and complexity of the corpus callosum. And, such small neural pathways take years (if not decades) to build. So, we have that going for us....
Secondly, E has some form of lissencephaly. This is "smooth brain" or the failure of the surface to form gyrae and sucli. It is not as pronounced as it could be (see "Wrinkles...In Time" entry) and there is a huge miarcle involved in this, but it is without any doubt that many of her gyrae and sulci (wrinkles) haven't fully formed. These wrinkles are essential to make a brain have enough mass to allow for cognition, etc. Minor forms of lissencephaly (but, really, are there ANY real minor forms of lissenchephaly?!!) can be manifested physically with the child being lethargic, very low muscle tone, and the child's brain having an inability to perform basic cognitive functions. Severe cases are shown to be vegetative states. Many sufferers of this are known as "floppy babies". They simply have no or very low muscle tone. So, that was another ingredient in E's neurological recipe...
Next, Elizabeth has microcephaly which indicates that her brain size is smaller than usual. Smaller size means less mass to use cognitive thought. That is fun...
Next, Elizabeth has something called cerebellar hypoplasia, which means the cerebellum is markedly smaller than it should be. Many indications resultant from this are that the child tends to rest in a fetal position or "balls up". They lay in an almost ball shape and cannot be straghtened out without significant effort. Also, their hands will remain in tight fists constantly and they won't be able to open thier hands or flex their fingers.
And then we have the added bonus of myriad other neurological issues that have either never been seen or studied in any significant amount, as well as metabolic issues that effect her growth and slow that down significantly, as well as this amporphous mystery stuff that indicates that her growth patterns are so slow as to be "glacial".
And, truly, my friends, that is only the beginning...but, this is the picture Bo was shown when she first met our sweet E. It can be overwhelming. It can be daunting to anyone. I know my beautiful and awesome E and what she is capable of, and that list intimidates me. It seems to present a child with little or no physical options for ambulation or movement. And, at the time Bo first met Elizabeth, our darling diva was showing some signs of her conditions. Her hands were always in fists. Always. She never opened them much. We would try to force them open in some way, but met much resistance. She was most comfortable in a bit of a ball, her knees up towards her chest. She didn't like to lay down on her back straight and always seemed to be doing "crunches" to go back in to a ball-like state. She was not eager to put weight on her feet and it was pretty hard to even get her to straighten out her legs. Bo saw all of this and was tasked with giving Elizabeth a physical therapy regimen.
And, then Bo started doing what Bo does best. She set some pretty huge goals for Elizabeth (after one year, she wanted E to have her hands open and be comfortable straightening out her legs) and began to work. She started to move Elizabeth's limbs and really push her to her limit. And then Bo finally met the Diva we had told her about. Elizabeth let Bo know very quickly that she did not like this new therapy one little bit. She screamed and cried. But, Bo was undaunted. Along with Kathryn, Bo lovingly encouraged E at every session to do a little bit more. Much of that encouragement was given over screams of protest and a stuck out lip, but it was given just the same. Then, E decided that screaming was obviously not working, so she began to try another tack. She pretended to go to sleep. Once Bo would arrive for therapy, Little Miss Bright Eyes would suddenly become sleepy and would "go to sleep". At first, Bo and Kathryn would just stop and say that she needed to rest (which was exactly what that little scamp wanted them to do!), but then Kathryn realized she was faking it. E would open one eye to see if they were buying it and got caught! So, Bo would continue to do some form of therapy on E while she pretended to sleep. I must admit it looked pretty odd to see Bo doing therapy on a seemingly sleeping child, but we all knew it was just E's attempt to avoid therapy. After E began to realize her little sleeping farce wasn't working, she tried something else. She would furiously use her "sign" for hungry to Kathryn or Bo. She knew that it seemed like her mommy would always stop everything to feed her, so she must have thought that Mommy would stop this crazy lady from making her move if she told her she was hungry. This, too, didn't work very much. But, it was funny to watch E desperately signing "hungry" with as much force as she could to try to get someone--anyone--to feed her to stop this therapy.
Now, please don't read this to think we were doing anything to hurt our sweet E. In fact, Bo was helping her greatly, but E was and is such a big ol' Diva that she was just trying to avoid the work. She's like anyone else who has to face some pretty tough physical therapy...and on that point, let me wander off the trail for just a second and acknowledge how completely awesome those displays of rebellion were for us to see. This child was supposed to be lethargic, vegatative and not "present". Not able to identify people or circumstances. And, yet, here she is formulating plans--plans!--to avoid therapy. Plans that she is able to figure out would possibly cause Bo or Kathryn to stop the therapy. Its ingenious, clever, manipulative, and just plain awesome! My little fighter, my blonde haired diva, is plotting a revolution. And we wouldn't have it any other way!
So, despite hunger strikes, random fits of narcolepsy, and vocal protests, Bo soldiered on--aware of the prognosis of E's conditions, but not relying upon them. Doing whatever she could think of to help E realize her ability. And, then...one day a few months ago...Bo got her iPhone and looked up an app that had a virtual xylophone with bright colors and put it in front of E. She would take E's hand and move her hand along the keys. E was mesmerized. She let out one of her huge smiles and you could just see her connecting the dots that she was making the keys make the noise. She was playing a xylophone. Her hands were making it play. And, the sleepy, hungry diva suddenly became awake with the possibilities. She loves that silly app and will play it as much as Bo will let her. So, we parents immediately downloaded the app on our phones, iPad and anything else that would take it! (It's called "Music Sparkles" in case anyone is even remotely interested!) And, now E will play certain notes and will return to that note over and over again. She is learning the sounds and recognizing that they are associated with certain keys. This is huge! Just huge! She is thinking...processing...and coordinating herself to play these notes. It's no symphony, but it sure sounds sweet to me. It is the song of God's grace and it is beautiful.
And Bo continued. She worked and worked, and frankly, my Elizabeth worked and worked, too. Kathryn and I were doing our homework with continuing to move her muscles and joints, we were letting Elizabeth discover the joy of movement, and seeing amazing results. So, we fast forward through a hard year of work and Bo told Kathryn that, when she had first begun to be Elizabeth's therapist, she hoped beyond hope to have Elizabeth open her hands up a bit after a year. That was the unattainable goal. Well, needless to say, she now leaves her hands open most of the time--no more default fists. Oh, and did I mention that Elizabeth decided to be the teacher's pet and go above and beyond what anyone would expect? Here it is:
Yes, the walking is shaky and tenative, but she is using both of her feet to coordinate steps. She is having to be supported, but she is moving her legs and feet. And is moving them in a left/right pattern...coordinating both sides to take supported steps. And, that ladies and gentlemen, was something she was thought to never be able to do. Except sweet, strong, determined Elizabeth knew better. God knew better. We always say that He made her perfectly. She may not be able to walk fully, but if that video doesn't exemplify how man's limits are merely God's opportunities to show His divine Plan, then you need to re-examine your understanding a bit.
So, what is the point of this? Honestly, I'm not sure. I know that all of this shows that God is much bigger than a diagnosis, that He lovingly embraces every person and can use them and their challenges to show how He is present to defy odds. It shows that we are constanlty surrounded by miraculous stuff, we just need to adjust our line of sight a bit. Oh, and it shows that Bo knows therapy!
We have many challenges to face as we progress through life with our sweet E. Things will come slowly for her--if they come at all-- but I am comforted to know that God has us in His open hand and all we have to do is trust that He will show us how to coordinate our lives to move forward.
This last picture is just one I love. No real continuity with the above dissertation on therapy, but it's fun. E found a magic wand toy while we were on a trip that she finds just fascinating and she waves it around all the time. The wand makes a "magic"-y sound when you press a little button and a blue light appears on the end. E thinks it's about the funniest thing ever and she enjoys that she can push the button to make the sound.
So, watch out everybody! Your Fairy Godmother is armed and ready to do some damage!
We hope finds everyone doing well and having a fun-filled Fall.
Matt, Kathryn, Caroline, Michael and Elizabeth!
