Friends,
As Autumn seems to be limping in (at least down here in Texas!), our family has been enjoying the nice weather and opportunities to be outside and playing. None of our crew has enjoyed this time of year more than Miss Elizabeth. She loves being outdoors, soaking up the sun, listening to the wind in the leaves, and being around her brother and sister as they play (usually with two-seven of their greatest friends in tow). She milks the "diva" reputation pretty well during these times, granting smiles and coos of approval when the kiddos come over and talk with her or even give her a kiss! (As a dad, I'm watching some of these young men closely...Elizabeth can be quite a flirt!) But, then, when she's done, and the frenetic chaos of the back yard is in full swing, she will go to sleep--resting in the calming sounds of her siblings playing. I love that scene. To a dad, it shows me that Elizabeth is most at peace when she hears others playing and she is calmed by the sound of the simple joys of playing outside. She seems to let go of her daily worries in that time and just resolve to hold on while the activity carries her away. We have seen this in Elizabeth since her birth. She is always the most calm and willing to doze off when there is a cacophony of sound erupting about her. It seems odd, but she feels most safe and loved when she is around the chaos of daily life. She sleeps like a ninja when we have tons of people over to watch a game or have dinner; she nestles down in the arms of whomever is in her good graces that day to sleep; a smile on her face as she knows that everyone else is buzzing around. She loves the activity. Now, conversely, when it's quiet and calm around our house (mostly after the two older kiddos have gone to bed/collapsed) Elizabeth is wide awake and eager to fill that void with activity. That can put a bit of a burden on her parents (who have heard rumors that sleep does allegedly occur on a semi-regular (even daily!) basis) but we enjoy those times as well. It is our opportunity to be with Elizabeth and talk with her without the activity of the day. Elizabeth doesn't seem to relish it as much as we do--she's searching for her partners in chaos.
I think the lesson here is pretty cool. Elizabeth seems to do the opposite of what we all try to do every day. She sleeps while the world is buzzing about her. She let's go--and then holds on! I think God wants us to see this as a way for each of us to try to look at our lives. There are a bunch of lessons (too many to count) that God has shown us through the unique prism of Elizabeth. But, in each one I think the theme is that we should let go of our own silly stranglehold we have on our lives--and then hold on to the glorious ride that is God's will for our lives. Release the circumstances a bit. In other words, relinquish control to another, wiser source. You have to let go of your grip on those things you are trying so desperately to control in order to have hands free and available to hold on to handles of the ride that you were meant to be on. Let go--and hold on. It sounds so silly--but it is really kinda deep. Let me give you a more concrete example of how we've seen this play out in our lives with Elizabeth, and maybe it'll make more sense:
Back when Elizabeth was about a year old, our pediatrician was noting that Elizabeth's growth patterns were so slow and non-normal and her weight gain had been sporadic. As a result, he referred us to see a pediatric endocrinologist here in town. The hope was that this doctor could give us some options about how to stimulate Elizabeth's growth or see if her thyroid was producing the right chemicals to allow for her growth. Looking back, we realize that this was just another aspect of Elizabeth that was going to confound diagnosis, but at the time, it was something we wanted to explore. The endocrinologist was just super. He was kind, very knowledgeable and took a great interest in helping us try to find a solution to help Elizabeth grow and gain weight. We tested and tested and tested. But, there wasn't any solution readily apparent. Her thyroid was working perfectly. So, we began to explore other options. After much discussion and thought, we decided to begin Human Growth Hormone therapy. The thought was two-fold on this: (1) the HGH would possibly "jump start" or encourage growth to get Elizabeth into a more normal pattern--and also encourage weight gain; (2) it would possibly allow for some "settling down" of the epileptic seizures in her brain. Apparently, it had been noted in some clinical studies that HGH had served to cause the receptors in the brain to modify a bit to reduce seizure activity. While we knew the seizure control was not a likely outcome, it certainly was not a negative side effect. So, after much discussion and the acknowledgement of her unlikely eligibility to play professional baseball or compete in competitive cycling, we decided to put Elizabeth on HGH. The HGH was to be administered to Elizabeth by Kathryn and I through daily injections. Now, let me pause just a second while you all think about that. Kathryn and I had to give Elizabeth a shot every day. Needles don't necessarily bother me, but the thought of having to give our sweet E a shot every day was not on my list of things I wanted to do. But, we knuckled down and learned how to administer the injections. And, we gave E her shot every evening for a year and a half. Once we got in the rhythm of it, it really wasn't that bad. Elizabeth got used to it as well.. She was a warrior and didn't even flinch after the first couple of weeks. It became a part of our daily routine.
Anyway, as you all know by reading this blog, the shots were amazingly effective and Elizabeth is now six and half feet tall...just kidding! As the year and half went on, we noticed some growth in Elizabeth, but it remained glacial. We agreed with the doctor that it wasn't hurting her in any way, so it was good to keep it up. Maybe this HGH was helping her grow even the small amount she was. Plus, it might be helping her seizures. So, we continued to inject. Every. Night.
The medicine was delivered by a company in the form of pens (like epi-pens) every month. And, in the beginning, our insurance covered it. But, soon, the insurance company awoke from its fever dream of logic and helpfulness and realized that they were authorizing an HGH injection for a patient who was determined to medically need such treatment, but who was unfortunately without a global diagnosis. Without a global diagnosis, the insurance company was unable to plug in said diagnosis into their handy-dandy computer and have all the necessary medicines and treatments outlined that would serve to cure the hypothetical patient with this diagnosis. The computer's hard drive veritably exploded with the horrible possibility that it may have to resort to actual human contact and except out the little girl who was unable to have a diagnosis due to the awesomeness of her creation. So, after eight months, the insurance company denied further authorization of HGH injections. Our endocrinologist went to bat for us and got an additional ten months out of them. He showed the insurance company that this HGH was medically necessary--novel concept!--and they relented. I also spent a good deal of time on the phone trying to explain to them that Elizabeth doesn't have a diagnosis because medicine hasn't seen someone like her yet. While sympathetic to me, they also made sure I understood that they couldn't plug it into the Hippocrates 2.0 Uber-Dispenser to have an easy answer. After assuring them that I now felt highly confident in the future of medical practice now that Hippocrates 2.0 was on the case, I hung up knowing that this battle wasn't won--just delayed.
But, each of those avenues of possible resolution soon closed. Each one was denied. Absolutely every way of keeping Elizabeth on HGH was blocked. And, so, in August, we discontinued the HGH injections. Elizabeth was thrilled! She didn't have to be poked every night! We were slightly less enthused. We felt like we had failed Elizabeth. We hadn't been able to fight hard enough or well enough to get what she needed. We refused to let go. We wanted to drive our circumstances---hold on to the control.
And, after being forced to let go, we then got the opportunity to hold on to God's ride with this. Grudgingly, we grabbed on and took off! Since August, Elizabeth has thrived! She has grown in length so that she is now busting out of her clothes. She is still small for her age, but she is growing. Her weight is now at 17 pounds and holding! She is eating very well and is healthy. Her cheeks are chubby and we even see the hint of rolls on her legs! She is currently cutting her molars (her MOLARS!)and has four very distinct teeth in her mouth. In all, she is growing. Not fast, but steadily.
So, once again we were shown through the seemingly silly example of HGH shots that we need to be willing to let go of our stranglehold of control and hold on as God takes us on His journey. I firmly believe that we absolutely should have fought as hard as we did for the medicine. (And, don't read this as some admission that Kathryn and I are anything less than warriors for Elizabeth with the insurance company!) But, the ultimate lesson is that when you let go of your silly perceived defeats, when you allow God to run His show, the outcome is so much better--so much truer--than you could create.
So, to each of you, if you are clutching something that is holding you down; if you find yourself spinning in the cacophony of daily life, unable to sleep in the noise you hear-- grasping for that handhold of control--I might suggest that you let go of that wish and hold on to God's hand. He has a pretty amazing ride planned--and, if you're very, very lucky, you just might get a passenger on that ride who has a smile of anticipation like this:
We hope everyone has a wonderful fall and a great Thanksgiving!
Matt, Kathryn, Caroline, Michael and Elizabeth
