Let Go and Hold On!

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.

Then, the hammer fell.  After 18 months of daily injections, the insurance company let us know that they would not be covering the HGH injections anymore.  This time, our doctor once again went to bat for us, but the insurance company was ready with the ol' nugget that "they had changed their medicine profile for coverage and (HGH medicine) was no longer covered."  So, in essence Hippocrates 2.0 had figured out that if it changed the list of medicines approved to cover only medicines that aren't prescribed, then it's metrics wouldn't be blowing out every month.  Smart move, Hippocrates 2.0, smart move.  So, in essence, that left us with the decision of paying for the HGH ourselves (out-of-pocket) or finding another way to authorize the injections.  (By the way, the out-of-pocket costs for the HGH were approximately $8500 per month!---completely/absolutely/without question NOT in our budgetary options.)  So, we appealed the decision and then appealed that decision.  We spoke with the pharmaceutical company to see if we would be eligible to receive the medicine through another source.  We checked into the possibility of whether or not the studies we were presently involved in that monitored the effects of HGH on epileptic patients would allow for continued use. We looked under every rock, searched for every way we could continue the medicine.  We thought if it was helping Elizabeth, we absolutely needed to keep going.  We couldn't just stop the treatment!  What would it do to Elizabeth and her progress?  See?  We were holding on with a stranglehold to our circumstances.  We wouldn't let go!

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

Open Hands and Virtual Xylophones

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!

Kneeling on the Battlefield

"Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own"

--"Never Once" by Matt Redman, 10,000 Reasons

Friends,

Well, Elizabeth is now rocking a g-button like a fashionista and frankly enjoying a little too much the added attention it brings!  The surgery for the button was a pretty crazy experience for us (even by our admittedly chaotic standards), but the long and the short of it is that E is home and we are getting used to this "new belly button" as Michael likes to call it.  Before I dig too deep, I wanted to send Kathryn's and my sincere thanks for all the prayers, thoughts, messages, kind words and shows of support that we received during the process.  Each of you are dear to us and we truly and absolutely felt everyone's prayers as we watched Elizabeth go into surgery.  "Thank you" always seems so small and insubstantial in relation to how much we appreciate each of you.  But, as always, it will have to do for now.  

One of these messages came from a very dear couple friend about a week after surgery.  They sent us a link to the above song by Matt Redman (great song, by the way...simply stellar message!)  and a few words of encouragement.  As I listened to the song, I was struck by the phrase "kneeling on this battleground".  I am a very visual person--usually you have to draw me a picture to help me understand the most simple of issues-- and for some reason the image of an old medieval knight kneeling on the battlefield was what my sleep-deprived mind put there in that part of the song. 

That image was a pretty awesome one to really encapsulate the last couple of weeks for Kathryn and I as we dealt with the surgery and post-op stuff.  Let me explain a bit:

Kathryn and I woke up on Monday morning at 3 am to leave the house with Elizabeth to go to Dallas for the surgery.  The reason we had done this was that we had to be at the hospital at 5:30a.m. for pre-op, and we knew that Elizabeth would sleep better in her bed at our house rather than in a hotel.  But, seriously, the 3 am wake-up call is BRUTAL!   As parents of a kiddo who goes to the doctor a good bit and is hospitalized more often than we would like, I think we instinctively begin to put on our battle armor (so to speak) as we get ready to go to the hospital.  We apply our metal covers, get our sword and prepare to battle and fight forces seen and unseen.  We feel the heavy weight of the armor on us, but feel protected from the dangers.  Parents are warriors for their kids in all circumstances, but the medical stuff --for us--requires armor and one heck of a big sword sometimes.

We got to Dallas and checked in and began the process of prepping Elizabeth for surgery.  E was perky and smiling, cheerful almost to a fault.   (Apparently, she is not only a morning person, but a pre-dawn morning person!)  As we began talking to the doctors, nurses and other medical personnel that were going to be in the surgery, Kathryn and I started to tell each of them the one thing we felt was very important:  Elizabeth is a very hard "stick".  In other words, we have found out the hard way that Elizabeth is almost impossible to get an IV into.  Her viens are very small and, when one is finally located it usually fails ("blows") after a short period of time in use.  So...we told everyone we could about that and tried to let them know that it might be best to try the one location that was found to work in the past:  her left ankle.  Everyone was very nice and nodded in understanding--thanking us for the warning.  Of course, apparently this is "medical speak" for "I'm really ignoring you, dumb parent, because we will do precisely what we want to once we get her back there."  Surgery began...and was over before Kathryn and I could really believe it.  The surgeon came in and said all went really well.  No complications.  They had placed a Bard button in and were going to watch her for a day or so to make sure there were no problems.  We were happy--ecstatic--and hopeful that all our worries on this process were unfounded.  We got through recovery and then were transferred up to Elizabeth's room.  We met the nurse on staff and went through all the hospital admission stuff.  That 3 am wake-up call was sneaking up on both Kathryn and I, but we soldiered on.  As we wheeled sweet E into the room, I noticed that the IV was in her left ankle (no shock there!), but that she had bandages on her right and left hands, as well as her left forearm...while I am no Matlock, I easily guessed that Stab-itha and Needle Nose Natalie had summarily ignored our request and stuck Elizabeth in at least three locations before finally geting a good vein in her left ankle.  It frustrated me, but I decided it wasn't worth getting angry about...yet.  We were loosening that armor a bit...putting down the sword.

Kathryn and I had gotten a hotel room right by the hospital as a "crash zone" for us, knowing from experience that hospital room couches are akin to the Iron Maiden in their comfort level.  We had planned to let Kathryn go to the room first once E was settled and stable to sleep and then I would tag out once she returned.  It was a great plan--in theory--at home--two weeks before surgery. As mid-afternoon approached, we were visited by Nurse Ratched from Wound/Ostomy to "teach" us how to use this new button.  She was a simply delightful specimen of human--all snappy retorts and withering looks, wrapped up in a sneering, sarcastic demeaning package.  She entered the room with a huff and proceeded to ask me if I knew how to use the button.  I jokingly said "no, this is my first alternative feeding source" which was met with the stony stare of a dead soul who was never exposed to mirth or joy as a child. (I admit the joke was bad, but hey she could have cracked a sneer...)  Anyway, Nurse Awesome then proceeded to try to teach me how to work the button.  She had a wonderful teaching style:  demeaning cracks at my apparently obvious stupidity mixed liberally with a constant self-acknowledgement of how supremely amazing her own nursing skills were.  It was a recipe for joy and light.  We got along swimmingly. 

She proceeded to tell me that there was one tube with a "decompression tip" attached that was used to empty the stomach of it contents after surgery (air and other incidental fluids mainly) into a bag.  This tip was shown to me with withering detail, as she explained to me very...slowly...and using small words-- that it was absolutely essential to empty the stomach before putting in any nutrient or medicine.  After this display, she then asked, "Did you understand all that, Dad?"  (Now, an aside here:  I know that it is protocol within nursing to use the terms "mom" and "dad" when talking to caregivers for children in hospitals.  I get that it makes it easier for nurses to communicate without needing to learn names and such...but, it can come across demeaning and callous if used too much...and Florence Nightingale here was using it like a verbal crutch...)  I told her that I understood this concept of decompression and she rolled her eyes (like she was saying..."sure you don't, you East Texas hick")  She then said this:  "Now, Dad, this is important...very important, so I want you to really pay attention...really pay attention. (Like I was being distracted by a shiny object in the room or something!) You can't do this wrong.  Always put the decompression tube and bag in if you want contents to come out--get it?  Don't try to introduce fluids through the decopression bag or tube...very important, Dad."  Uh...gaw-lee, nurse-lady...that there bag thing is an "out" thing, huh?  Don't try to put "in" stuff in the "out" door, huh?  Wowsers.  This medical stuff is haw-urd! (sound of me spitting my dip into a spittoon!)

She then proceeded to insert the decompression tube into E's Bard button and set the bag on the side.  She told me that they were going to allow for decompression for about three-four hours (she helpfully held up the fingers indicating these numbers in case I was unable to mentally climb these mathematical heights) and said she'd be back to change out the tubes and connect the in-flow bolus.  I thanked her profusely for exposin' me to her book learnin' and wished her a safe trip back to the ivory tower of awesome.  

I sent Kathryn to the hotel room at that point so she could rest, as we were going to just wait on the decompression and E was sleeping.  Right before she left, E's floor nurse (who really was very nice!) came in and noticed that her ankle was swelling.  She knew then that E's IV had "blown" or gone bad, so we removed it and decided to try to find another place to put it in, so E could get fluids.  It wasn't a great turn of events, but Kathryn and I had gone through this many times before, so I went ahead and sent Kathryn to the hotel to get some rest.  Our armor was now loosening up nicely and our sword was on the other side of the room.

For the next couple of hours, E slept and I enjoyed watching her at peace.  I was supremely thankful for how God had helped us get through this stressful time and was so glad E seemed to be tolerating this new stuff so well. As the afternoon wore on, our floor nurse had sent requests for the IV Team at the hospital to come up and try to re-establish the IV on Elizabeth.  I had requested this, as we all knew she was a hard "stick".  The IV Team came and tried to find a new place for the IV.  Three attempts and no luck.  So, they gave up and sent up some nurses from the NICU to try.  They were very nice, but also spectacularly unsuccessful.  Finally, the surgery nurses were sent up, as they are apparently the "best" at getting an IV connecfted.  Four more attempts by them, and still no successful IV.  By this time, five hours later, E had been stuck and prodded over eight times and was NOT happy.  No IV was able to be introduced, so no fluids had been introduced in that time.  Plus, her decompression bag was in, so she was draining out excess air or fluid.  The pressure was ramping up.  You could feel it.  Kathryn had been texting me from the hotel room during this time (obviously not sleeping, as her mother instinct told her that the IV thing was a bigger deal than everyone thought.)  I wasn't answering the texts as efficiently as I could, because I was holding E down as the various groups prodded her to get an IV started.  The armor was getting put on again...

Finally, I spoke with her floor nurse and asked if we could introduce some fluids through her button when we gave her medicine to her.  At first, it wasn't thought to be good idea, as the orders stated to not use the button for 24 hours (except for medicine) but, I was persuasive.  The alternative we all knew was to think about giving E a PIC line, which is basically a centerline introduction system which was pretty invasive and major.  No one wanted to do that to her this soon after surgery.  I could feel myself getting more and more tense.  I didn't like where this was going.  I started to search around for that sword again.

I had also told myself during this time to not bother Kathryn at the hotel. She was hopefully resting and I knew that was more valuable than these little issues.  (Of course, I was the dumb one on that...as Kathryn's mother instincts were on full power, and she knew something was up...she was putting on her armor as I was thinking this.)  Anyway, then the floor nurse came in and removed the decompression bag and then got the in-flow tube and inserted it.  She had gotten approval to give E her epilepsy medicines and also a little fluid.  I sighed a bit.  Finally, we were getting somewhere. 

And, then, it happened...the nurse started to introduce the medicine through the tube and got resistance.  Nothing would go in the button.  I was standing over the bed holding E's sweet little hand and watching the nurse.  She hit resistance and stopped.  She was a complete professional, but it obviously surprised her.  She put it down and went to get the shift nurse.  I stayed holding E's hand.  Panic was welling up.  I knew what this meant and it wasn't good.  The nurses came in now and the shift nurse tried to introduce the medicine.  Nothing.  Resistance.  Watching their faces confirmed what I feared.  Resistance to inflow meant that there was a blockage in the stomach or a kink in E's system.  That was NOT good.  The nurse went out to page the surgeon on call to get him to look at it.  Suddenly, the pace of everything was speeding up.  I continued to hold E's hand as she slept--unaware of what was happening.  The armor was on--the sword was clutched.  The battle was beginning again.

The surgeon arrived and had the same problems with the button.  He looked confused.  He said he needed to talk to some colleagues to see how to proceed.  He kept saying: "But, it shouldn't be doing that.  The blockage shouldn't have just happened.  I'll be right back."  And he left.  E's nurse then looked at the line, and up at me.  "How are you doing, dad?" she asked nicely.  She had said it right.  Kindly.  I looked up at her--tears welling up.  "I'm not awesome." I said "I know what's coming, and I don't know if Elizabeth can handle it.  She hasn't had fluids in hours--her surgery was only 12 hours ago. We can't get an IV--we'd have to get a PIC line started before surgery.  I need to call Kathryn."  The nurse looked at me--and I'll never forget this--and said "Elizabeth's a fighter.  We all know that.  This battle isn't too big for her and her army."  And then she left.  The room was quiet.  I was clutching E's hand--crying silently--running through the options ahead in my head--praying with all my might for a miraculous solution to this--and at the same time attacking myself with the thought that this surgery had been a voluntary one--one that we thought would help our sweet E--what had we done?!  The battle was on.  The enemy was engaged.

I grabbed my phone to text Kathryn.  I needed her there.  I knew this was going to get worse before it got better.  Kathryn is my rock. As I was texting her to come on over, she walked in the room.  She had known something was up.  She is the mom.  Don't ever mess with or doubt the mom!  I brought her up to date and she and I each held Elizabeth's hands and steeled up.  We prayed a quick, but fervent, prayer and the original surgeon from that morning who had done E's procedure came in.  He had been called out of surgery to come see about Elizabeth.  He is wonderful and immediately tried to introduce the medicine through the line. No luck.  Three surgeons and two nurses were also around the bed watching--puzzled.  Kathryn and I began to talk out the day with the surgeon--verbally stepping through everything that happened.  Suddenly, I had the thought about the decompression bag and Little Miss Happy.  I said to the surgeon, " Well, Elizabeth had the decompression bag in for over three hours--why is it empty?  There isn't even any gas in it.  Isn't that wierd?"  The surgeon looked up.  "What?  What do you mean?"  I immediately felt foolish.  I'm not a doctor. That detail was stupid--unimportant.  But, instead, he grabbed the bag--still on her bed and looked at it. He had a small smile-shaking his head.  He then immediately pulled out the inflow line that was inserted in the button and compared the tubes.  He addressed the group, "Well, guys, the lawyer here figured it out.  Someone put an inflow tip on the decompression tube and bag.  So, for hours, the bag didn't fill because contents couldn't flow out.  Then, the tip on the "inflow" tube must be the decompression tip--so when we tried to introduce the medicine into the stomach, it wouldn't flow in...because the tip wouldn't let it."  He proceeded to then switch the tips of the tubes and introduced E's medicine and fluids into her button with ease.  Crisis averted.  In that instant that the medicine flowed into Elizabeth, I felt like the weight of the world lifted.  I looked at Kathryn and we both communicated with each other without saying a word.  The battle was over.  As everyone filed out slowly and the doctors and nurses congregated to modify orders now that they had solved the issue, Kathryn and I still stood in that room each holding Elizabeth's hands... thanking God for the miracle we had asked for.  The seemingly simple solution to the knot of problems.  We were, at that moment, kneeling in our armor on the battlefield knowing we had not fought alone.  He had been with us throughout the process.  Never alone. Never once.

 And so, we have returned home with our sweet, strong valiant E to learn how to live with our button.  Understandably, after that little incident at the hospital, we were a bit less than enthusiastic to request more time with Nurse Awesome to teach us how to incorrectly place a line into the button.  We may be hicks from East Texas, but I would venture to say that even we know that whole "square peg, round hole" saying.  I sincerely don't dislike her for the mistake she made (we ALL make mistakes) but I did kind of not like that she was condescending to us while making the mistake.  Shockingly, we never saw her again while we were at the hospital. 

But, that loooong story was necessary (I hope) to let you all know about the lesson here. Elizabeth's journey is awesome, amazing and unpredictable--but all of us, regardless of who we are, have struggles.  We all have things that we battle.  We all have dragons to slay.  We put on our armor every day and attack constantly.  But, the picture to see is that one of kneeling in the battlefield.  That picture of us with our armor on--the battle having been fought--or still being fought--acknowledging that God is there with us giving us the power to slay those dragons.   It is His strength that allows us to keep fighting.  It is His will that allows us to take the next hill.  But we have to acknowedge it.  Because in this battle, it is a strange dichotomy that the very person we are fighting For is also the person we are fighting Alongside.  God is both our fellow warrior and our patron. And, we also should all know that there will be battles.  And, we are called to fight in them.  So, fight on, warriors, secure in the knowledge that you are never alone!

(And, if one of you want to try to explain that concept to Nurse Awesome, I sure would appreciate it.  Best advice I can give:  talk slowly and use small words!) 

We continue to be in awe of each of your wonderful support of Elizabeth and her story.  We thank you sincerely for your prayers and kindness. On to the next battle!

Pressing the "button"

Friends,

Well, we have had quite an interesting couple of weeks with Elizabeth. She was doing great and enjoying the summer and all that it brings: her brother and sister being home more (which is always a wonderful thing!), being able to be outside (which she loves!) and soaking up the blessed chaos of a summer at our house. She was alert and responsive, chattering up a storm and making new sounds in her attempt to get a word in edgewise with Caroline and Michael. She was working hard on her physical therapy and seeing some results begin to form.

And, then, she decided to stop swallowing. No warning. No indication of problems with her stomach or her food. Just. Stopped. Swallowing. She wouldn't swallow her food, her medicine, any liquid. She was done with it. She would hold the food (with her medicine) in her mouth and refuse to swallow and then spit it back out. Now, she had done this before on a couple of occassions when she had a stomach bug, or her throat was hurting, but she had popped back to normal quickly (within a day or so). But, now, it was different. She was not "popping back" and there was absolutely no indication of any problems with her stomach or throat. Once we got to day three of this little rebellion, we knew we were dealing with something new.

Now, let me give a little bit of context about why we were amping up quickly on this. You see, Elizabeth gets all of her medications (two anti-seizure medications, liver supplement, anti-reflux medication, etc.) via her mouth usually mixed with her food. She doesn't like to take the medicine straight so we try to disguise it within her super-fortified mush. She has to have her medicine (in some form) five times a day. This means that she is usually eating something on a pretty strict schedule. Also, to add to the confusion, we have to give these medicines at certain times and within certain intervals or we risk opening up a window for Elizabeth's seizures to break through. It is a delicately balanced system that has worked for us so far, but, as we were now seeing with a bit too much clarity, it was easily succeptible to destruction.

Elizabeth's Spit-In began on a Wednsday. Once she was making it clear that she wasn't going to swallow, Kathryn and I kicked into our DefCon 1 mode and began to experiment with other ways to get her to swallow her medicine and minimal bits of food. At this point, we thought maybe she was just in one of her moods because of a throat thing, so we didn't yet consult with our doctor. We'd been here before and didn't see a need to panic. Kathryn began to slowly feed her small bits of food with medicine and found that if she held her a certain way, she could get miniscule bits of the medicine down. This was a laborously slow process. (what usually took twenty minutes when she was eating well, was now taking two and a half hours to get minimal medicine and food down...multiply that times five times a day and...well...I'll wait while you do the math...) Needless to say, by Day Three of this little joyride (Saturday) we were getting the message that we needed to get some more info. Of course, it was Saturday night and we couldn't see our pediatrician until Monday morning (we had the first appointment of the week already set up!). So, we called in the cavalry. Our dear doctor friend who has helped us out on many occassions was nice enough to come over and check her throat for obstructions or other explanations. Nothing was evident. No overt problems. So, back to the dripping of Gatorade and Depakote method. At about midnight on Saturday, we called Elizbaeth's speech therapist (who is simply awesome!) and consulted with her. She gave us some great tips on trying to get Elizabeth to swallow so that we could inch our way along until Monday. (Speech therapy consult on speakerphone at midnight on Saturday while dripping Gatorade into the mouth of a two year old special needs child...and you thought your weekends were epic!)

So, we sloughed slowly to Monday morning. Kathryn and I were constantly praying for a miracle. Stress was amping up. We try valiantly to not let our worries show too much to the kiddos, but Michael and Caroline are not stupid. They knew something big was going on. Caroline wandered around the house constantly saying prayers out loud to God as only she can, "God, it's Caroline. Let's get Lizzie Leigh to swallow, okay? She needs to be hydrated!" Michael was our little helper. He was always bringing Gatorade bottles to us to help with E. (Of course, he usually would take a big swig before handing it over, but we deeply appreciated it all the same!) Our family was working well in the crisis. I was proud of them.

Monday came and we saw the doctor. He confirmed that there wasn't anything obviously blocking her throat or anything medically causing the lack of swallowing. And, then we all knew where this was headed: The g-button. A g-button is a feeding tube that is surgically inserted into a person's stomach that has a "button" type port attached to the abdomen so that parents can feed a child via this button and make sure medicines and nutrients are able to be digested. It is not that uncommon and is used for many reasons with great success. But, Kathryn and I had been very hesitant to do it before now for a multitude of reasons (that's the subject of another blog post, I'm afraid!) Now, we had come full circle on it and saw the device for what it truly was: a rare chance for us to give Elizabeth a chance to thrive. An insurance policy for Elizabeth in case she tries this swallow rebellion again. And a medical breakthrough that would give Elizabeth some freedom to enjoy life instead of being married to a strict eating schedule.

Conquering any difficulty always gives one a secret joy,

for it means pushing back a boundary line and adding to one's liberty.

--Henri Frederic Amiel

Once we had a plan and a medical light at the end of the tunnel, we released just a little bit the tight grip of worry we had on this. Kathryn was nothing short of a ninja about feeding and had created a way to let Elizabeth get enough to stay hydrated and get her medicine down. The older kids were awesome helpers and acted as entertainment for Elizabeth while this process was working. (Elizabeth, ever the diva, was frankly relishing all the attention!)

So, I tenatively went back to work that afternoon to get all my stuff organized and prepare to be gone for the surgery. I am always the worst in the family to let the stress go, so I admit I was still pretty amped up when I got to work. I arrived in time to go to lunch with some colleagues. My mind was still focused on the surgery and all the implications, spinning and darting among the possibilities. While at lunch, I saw someone I barely know--I wouldn't even call them an acquaintance really-- and they overheard me talking to our table about Elizabeth's swallowing issues. This person, obviously uncomfortable with the subject, but wanting to stay in the conversation for some reason, said, "It must be just terrifying for you all to face that every day at home!" Um...wow. It never ceases to amaze me that some people are simply not actively using their mental filter! My initial reaction was not the most Christian response. Luckily, I activated my mental filter before actually suggesting to this village idiot why such a statement confirmed the existence of regressive evolution in East Texas. Instead, I just looked up and said that, in fact, it is the furthest thing from "terrifying" at our house. It is peaceful, happy, joyous. We are blessed beyond measure and this event, while seemingly frightening, is just another way that God is showing us the wonder of His creation of Elizabeth. It is another way that we can see that we have to give up the seemingly impossible tasks to Him and marvel at what He can do with them. The filter-less person obviously didn't grasp this in any form and proceeded to continue to verbally wonder about how we faced such a "constant terror" in our home. Simply astonishing. But, I also saw through that silly conversation that my response was not really for that person to hear. They were obviously intellectually overwhelmed by the need to breathe and walk at the same time.

Instead, it was for me to hear. I needed to really take in that all of this was truly a way to see clearly that God is in control and is taking care of Elizabeth in His own way. Do we want to have to give Elizabeth a g-button to eat? No. Do we wish there was another easier, less dramatic solution? Absolutely. Do we wish that we could just have "normal" problems that don't involve scary medical issues? Absolutely NOT. It sounds funny, but we are thankful we are exactly where we are with Elizabeth and our family as whole. It's not easy, but it sure is awesome.

So, we have now gone through the procedural obstacle course of barium swallow studies and surgical consults and have set up a g-button surgery. All the while, Elizabeth's eating has slowly gotten better. She seems to be "popping back" from this again. But, Kathryn and I are now undaunted. The message is clear. We need to do this for her and to prevent other incidents like this in the future. God has made this decision very obvious. We need to complete it. And, as ever, God was making His plan known through this process. He allowed Elizabeth to begin to eat again after we made the decision to get the g-button so that Elizabeth would be healthy and strong enough to have the surgery. He allowed us to have a wonderful surgeon who we trust be able to do the surgery. And, He gave us the blessing of being able to take a deep breath before having the surgery to allow us to truly know that we are making the right decision and tamping down the fear that we had about the "button". We know that we needed this time to show us (and Elizabeth) that our fears about the button and its implications were minimal in comparison to the liberty it would offer Elizabeth. And, too, I think it also allowed our faith in God to grow stronger and allow us to truly give Him our irrational fears. You'd think we would have learned a bit about this by now, but apparently, our learning curve is steep.

Faith is reason turned courageous.
--Sherwood Eddy

So, the surgery is scheduled for Monday, July 2 in Dallas. We look forward to updating everyone on how well this new device is allowing our sweet Elizabeth to thrive. We thank you for your thoughts and prayers that support each of us constantly. This journey is truly blessed and we are each blessed by you.

Matt. Kathryn, Caroline, Michael and Elizabeth Rowan

Cutting Through The Fear

   “The one permanent emotion of the inferior man is fear--fear of the unknown, the complex, the inexplicable. What he wants above everything else is safety.”—Henry Louis Mencken

Friends,

Fear can be a horrible companion.  It is deceptive, has a horrible sense of scale, and can make the most reasonable of actions seem crazy.  Kathryn and I are constantly trying (sometimes with success—sometimes without) to tamp down the ever-present fear that we have about our sweet E and her conditions.  I guess it’s a part of being a parent, and trying to keep your constant worry about your kids’ safety and well-being in check to allow them to actually experience life.  But, man, is it difficult to not go to that well of worry and sit a while—drinking in the fear of what could happen!

Adding to our silly worry-palooza is the extra bonus of the absolute inability for anyone in the medical or scientific field to give any indication about what to expect with Elizabeth as she grows.  Now, we’re not mad about that at all (in fact, we think it’s a very cool and awesome way in which God reminds us of who is in control here—and who will guide us in this journey!), but, seriously, if we hear another good doctor say as she or he shrugs their shoulders, “Well, we have never seen anyone with half of this stuff live this long.  We don’t know what to expect.  We’re stumped.”  I might have to scream a bit.    We’ve heard just this from a couple of beloved and trusted doctors this week—and while I know they meant well—it took me to the well again. 

Now, Kathryn, as many of you know, is a force of nature.  She is a lady of action—she does not suffer fools at all—and she accomplishes more in a half-hour than I can seem to get done in a week.  She is stronger than anyone I know and has been a rock during this entire experience.  She handles the twists and turns of Elizabeth’s medical mystery with a grace I can only hope to copy.  She has taught herself the ins and outs of all the potential diagnoses, regularly silences multi-degreed specialist doctors with her seemingly vast knowledge of complex medical syndromes and symptomology, and is a seemingly fearless advocate for her childrens’ care and safety.  Woe be to the unsuspecting fool who dares to cross her if it involves Caroline, Michael or E!  Trust me, it won’t end well for you…

Conversely, I don’t handle the worry and fear that well.  I internalize it.  Let it soak.  Marinate in it.  I hate to admit this, but the “man” in me thinks that it is good to keep all my fears and worries inside so that I stupidly think I can keep them under “control”.  I’m always trying to think ahead to the possible outcomes to see how best to handle it.  It’s like some really demented chess game I play with myself to no good end.  I’m sure that there’s years of psycho-therapy in my future to address this, but that will have to wait for now…

Anyway, now that you all know a little more about how Kathryn and I process all this stuff, on to this weekend… Kathryn and I had decided a few weeks ago that our family needed to take a little vacation.  It has been too long since we have left the zip code and the kids were getting antsy.  It is that truly magical time of year right now where Caroline and Michael are finishing up school and are apparently mentally preparing to wreak havoc on the homefront for the summer.  Our carefully calibrated schedule and balancing of responsibilities is completely shot.  Parties celebrating completion of the last week of school, graduation, finishing up sports seasons, and apparently any other gathering of elementary age children abound.  Couple that with swimming lessons, tennis lessons, summer camp applications, talent shows, field days,  rodeo round ups, and spontaneous lemonade stands and any feeble attempt to bring order to the chaos simply falls to the wayside.  So, once we collapsed at 12:30 one evening after a particularly entropy filled day, Kathryn and I decided to take the crew to San Antonio to go to Sea World and see the Alamo for a quick weekend. 

We have learned—the hard way—that Rowan family trips really need to be semi-spontaneous.  Frankly, if Elizabeth is doing well and hasn’t thrown a curve ball to us all medically in several days, we figure we need to go while the going is good.  (See?  That ever-present fear/worry is even dictating our trip schedules.)  So, we booked a hotel room,  I took Friday afternoon off and we pointed the car south.  We had a great time.  It was crazy, busy, and cramped.  The kids got to see lots of things they had never seen.  We had a fun experience as a full family.  It was a precious time.  Here is a picture of my three rebels in front of the very example of principled rebellion:

But, just as we were preparing to leave for San Antonio--that Thursday night—Elizabeth got grumpy.  Now, let me explain that a bit.  Elizabeth is the most wonderful diva—she can express her displeasure with the best of them—and is a consummate pro in letting people know what she thinks and if she is less than enthused at the circumstance.  But, that always passes. She is not fussy.  She is not a wailer.  We are blessed by that.  But, on Thursday night, she was wailing!  She was crying all night like she hurt bad.  She wouldn’t eat—refused to be consoled.  This was NOT normal.  Her face was flushed (maybe because of the wailing) and she seemed to be running a little fever.  She was just not herself.  Now, to any other normal parent, this would have been unusual but not overly worrying.  Maybe she had an ear infection coming on…maybe she was fighting a cold…etc.  But, in our house, and based upon our last couple of years, such an easy explanation was not in the cards.  That ever present worry well was filling up fast…my mind immediately went to what it could be in our “Elizabeth vocabulary”…maybe her hemangioma was beginning to involute again (cue LaserFest 2011); or she was not processing her medicine like she should (cue Spontaneous Static Seizure-fest 2010) or maybe this was another way she was choosing to exhibit that her epilepsy medicine was having the side effect of eating her red blood cells and causing hemostasis (cue Transfusion-fest 2012); or maybe it was something completely new and unforeseen…the possibilities were endless and none of them seemed to be good.   As I held Elizabeth and tried to console her a bit, I began to tamp the fear back down…began to internalize it…let it marinate. 

Kathryn was also reacting to this new side of E.  She talked me through the possibilities, and settled on most likely an ear infection.  She faced her fears and determined their origin.  She processed it and moved forward.  As I have said to many of you, I can learn so much from Kathryn and should have done so then.  But, I didn’t.  I was determined to play my mental chess game…

We both decided that we simply could not postpone the trip because of a fussy Elizabeth and soldiered on.  We had a great time.  E was good and enjoyed the time with Caroline and Michael.  She was a trooper and her fussiness was present, but not overarching.  She seemed very content to be with her family and enjoy the new experiences.

                                                 (Like the very comfortable feather bed!) 

She wasn’t eating like she usually does, and since her food includes her medicine, Kathryn and I became a little worried, but had seen worse. (cue Bottle Banishment 2011)  All in all, the kernel of worry was placed in the back of our minds where it should have been all along.

However, when we returned, the fussiness amped up a bit and my well of worry began to fill again.  I was determined not to say anything because it would serve no purpose.  I just marinated in the myriad possibilities.

Cut ahead to Tuesday.  Kathryn texted me at work about logistics on getting to Caroline’s talent show.  At the end of the text she said, “PS all is well but may have found culprit to e’s fussiness”   My mind reeled.  I’m sad to say that in that moment, my tamped down fears took hold.  The possibilities swirled.  I began to steel myself up for a new discovery.  I let the worry win.  Now, I know that you all are saying,  “But, Matt, seriously, Kathryn said all was well. You’re being stupid.”  --and frankly, you are right!  But, I think what this shows is that when you let worry and fear dictate your thoughts—when you make the silly decision to let your fears control your reactions—logic seems to be thrown out a bit.  Plus, God is in control—always!  I should have rested in Him and not let my worry overwhelm me.  But, I didn’t.

"There are very few monsters who warrant the fear we have in them"—Andre Gide

So, I drove home trying to not think about what “it” could be.  Not going there in my mind (which only meant that I went there multiple times)!  When I got home, Kathryn greeted me at the door with a grin.  I felt better just seeing that, but still was nervous.  I came in and E was sleeping on the couch—mouth open, snoring gently.  When I got to her, Kathryn jokingly said, “Well, what do you see?”  I’m slow to the up-take on my best day.  I shrugged.  And, then she showed me.  Elizabeth Leigh Rowan, two years and one month old, had cut her first tooth!

And, so I laughed (and cried) and sat there amazed at how—once again—God had used a simple thing like a baby’s first tooth to show me how to put all of this in focus.  It is  funny—and very encouraging—to see how God can use our silly fears and worries to bring about a wonderful insight into His plan and His love for us.    We had been told by many doctors that, due to Elizabeth’s conditions and growth pattern, it was very likely that she would never have teeth come in.  I guess it goes with this whole glacial growth thing.  Frankly, Kathryn and I had resigned ourselves to that fact months and months ago.  It just wasn’t in the realm of our expectations any more.   And, yet, God had it planned all along.  He decided-in His ultimate wisdom-to bring that tooth in when He wanted it.  And, to let it be a lesson to that silly, worrier of a dad of hers that he needs to quit going “there” in his mind, because “here” is  much better place!

There’s a lesson here—somewhere.  Everyone worries, everyone deals with their fears.  But, isn’t is great that we serve a God who can take those worries and fears (and all the silly pent-up drama surrounding them) and replace them with a simple glimpse into His plan for you.  All you have to do is let Him.  Safety is not the organized control of circumstances in your life.  It is simply the calm peace that comes in knowing you have handed your fears over to someone who can truly handle them.

Thanks to all of you who continue to pray for our sweet E.  She is doing great—truly!  And who knows, maybe we’ll have a second tooth by Christmas! ;)

The Dogwood

Friends,

 Our little Diva is becoming a bit of a stroller snob.  We acknowledge that.  Now, E has always been interested in being outdoors and loves nothing more than reclining in her bouncer on the back patio, listening to the birds, or watching her brother and sister play basketball or fill water balloons, etc.    She loves being outside  and experiencing all the new sounds and sights.  Her new favorite activity is to go on walks with Kathryn in the mornings in her new “limousine”.  A few weeks ago, we finally caved in a bought a jogging stroller for Elizabeth after her therapists and others thought that Elizabeth had gained enough upper body strength to sit in a reclined position.  (It’s the baby steps, I guess.)  Once E got in that thing, it was like we turned on a new light.  She loves it!  It is a smooth ride (the previous stroller was some modified tubular pixie stick thing with plastic wheels that let her car seat/carrier sit on it.  It was like pushing an old coffee table with only square wheels…no wonder E hated it.  We didn’t know how good pushing a stroller could be until we got the new one!) and E can sit up enough to see what is going by.   She is vocal about her seemingly constant desire now to go on walks with the stroller. (the pusher of the stroller is apparently not very important…only that there be one!  She is not picky about who accompanies her on her new sojourns.)  We have enjoyed seeing E get out and about and like her new “mobility”.   She thinks she is rollin’ now, I guess.

A few weeks ago, when the Spring flowers were all in bloom here in East Texas, Kathryn came home from one of her walks with some branches of white dogwood that she had cut.  They were really pretty and she put them in a large vase on our breakfast room table.   I thought they looked very nice, but Elizabeth was completely entranced by them.    I have literally never seen Elizabeth be so completely interested in something before.  She would sit in her bouncer on the breakfast room table and just stare at the dogwood blooms right next to her.  Many times she would then smile and grin as if she had just thought of something funny.  This went on for hours.  She was mesmerized.  She would kick (which means she is happy and excited) whenever she could be near the blossoms.  She would “talk” to them—making sounds and being very forceful with her vocalizations. (Apparently, the dogwood flowers needed to be informed about something VERY important!)  All in all, it was a fun, completely unexpected time of joy for E and we loved watching it.  It was a moment of watching Elizabeth have unbridled joy in God’s creation that Kathryn and I loved getting to witness.   Of course, we took a picture, here it is:

Well, we moved on with everything and E’s birthday came along.   We had a really wonderful time  at a little family party for Elizabeth and  enjoyed celebrating the absolute wonder of Elizabeth’s time here so far.  E loved the cacophony of everyone being around and I think also reveled in the attention.  Once a diva… you know.  Anyway, as everyone was arriving, my mom and dad pulled me aside and asked me to help get E’s gift out of their car.  I protested a bit as I thought Kathryn and I had been pretty clear that E didn’t need anything, and they didn’t need to get a gift. (That protest was met with my mom’s best “Whatever, Matt, we don’t listen to you on silly things anyway…” look.) So, I proceeded to help them with the gift.  I’ll fully admit I got a little misty eyed when I saw the gift.  My parents had gotten her a dogwood tree for us to plant.  So simple, and yet so amazing.  We had instructions to plant it where Elizabeth could look at it and watch with wonder as it grew along with her.   Really cool.

Well, as Kathryn and I collapsed after the party finally shut down (seriously, Elizabeth’s grandparents and great-grandparents know how to have a good time---and won’t ever be the first to leave  an event!   In a moment of unbelievable irony, I think Uncle Jon was the first to go…and that NEVER happens! ;)) we looked at each other and kinda broke down.  Not in a bad way—but happy tears of getting to a milestone that no one ever thought we could get to.  Elizabeth continued to amaze and surprise and her 2^nd birthday was a great day of reminders that we need to just get out of the way sometimes to let God and His wonders free.  It was a little moment in time to thank God for His grace and for the time we have had with Elizabeth and the wonderful times we will have in the future.   And through my silly tears, I saw that dogwood tree with a pink bow on it…

Many of you know the story of the dogwood.  Depending upon what you have heard in churches or beyond, many people think that the wood of the dogwood tree was what was used to crucify Jesus.  I don’t know if I believe that, or if it is that important what type of wood it was, but it is interesting to think about.  Further, we have all been taught in Sunday School about how the flowers of the dogwood—those same flowers that Elizabeth simply could not get enough of—are a startling natural symbol of Christ’s sacrifice.  The flowers usually bloom around Easter every year.  The flowers usually have four petals in the form of a cross, with  indentions at the tips of the petals that signify the nails that were driven into Jesus’ hands and feet.   If you look closely at the indentions, you will see a faint red stain around them, signifying the Blood spilt for your sake.  In the center of the bloom you will see a green bloom that looks like the crown of thorns placed upon Jesus’ head.  Sometimes seemingly random things,  just aren’t random at all…

 Now, any of you that read this blog know that I am not a big believer in random coincidence.  Too much has happened in my life to allow me to glibly explain away events as cosmic accidents.  Everything is purposeful and I gain great comfort in that.  If you choose to believe that God is not real and that all these random happenstances are just odd unrelated instances given importance by a shortsighted, desperate person clinging to the faith of his father in order to give false order to entropy, then I feel very bad for you.   (And, pssst…I would aver to you that it takes far more “faith” to ignore the clear connections in every day and every person that point us heavenward!)   Anyway, I know with deep fundamental clarity that the dogwood is by no means a botanical accident.  It was created to show others the beauty and wonder of its Maker.  The symbolism woven into its flowers is a comforting nudge leading one to understand the mystery of its Creator.  When it blooms, its tells its story with beauty and wonder.   

Oh, and one more thing… the dogwood is a notoriously slow-growing tree.  It won’t ever get very big and seems almost…glacial…in its growth pattern.   Hmmmmm…  And, yet when it blooms it all its glory, it uses all its strength to tell the story in many ways of the grace and wonder of God and His perfect creation.  And, my Elizabeth was completely entranced with it.  She “talked” with it like a kindred spirit and was content to look at it for hours.  That’s no accident, ladies and gentlemen.  God is unfathomably cool. 

‘Nuff said.