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.

Embracing the Question Mark

Friends,

It is hard to believe (but also exciting to behold) that our amazing little Diva, Elizabeth, is going to be two years young today-- April 13!   And what a two years it has been!  Each of you has been so instrumental  and essential to us through your constant prayers,  unwavering support, willing ears when we needed to talk, willing shoulders when we needed to cry, and awesome wisdom when we needed to hear it.  Kathryn and I thank each of you sincerely and wholly for everything you have done and what you will continue to do as we all watch this little life come into clear focus as an unbelievable testament to the power and grace of God.

We have watched the last few months as Elizabeth has continued to amaze and stun myriad people along her way.  We have cranked up Elizabeth’s physical therapy and speech therapy  recently as she indicated that she was able to physically handle it.  In other words, through Kathryn’s diligent and untiring efforts, Elizabeth is starting to gain a little bit of weight and be consistent with her eating.  (which has been a long struggle!)    She has her “mush” that she eats four-five times a day—her rice cereal and formula gruel that is fortified with Greek Yogurt, vegetables, fruits, olive oil, you name it…--and just recently, Elizabeth once again surprised us and began to take the bottle again!  (Well, truth be told, Kathryn was determined to get her back on the bottle to help her with liquid nutrients and her laser-like focus and iron will coupled with a mother’s determination to re-teach Elizabeth how to take a bottle resulted in E’s re-acquisition of that skill!)   Adding to this was a great speech therapist who weekly came in and began to work E’s mouth muscles in a way that gave her confidence to grip and hold a bottle.  It really is truly fascinating to see how the miracle of God’s creation can be exhibited in something so basic as a baby taking a bottle. 

Also, Elizabeth has been attacking her physical therapy like a ninja!  She has it usually two/three times a week and her therapists are doing some amazing things.    They simply are stunned at how well Elizabeth is doing.  While E  likes to complain loudly during her therapy, our therapists know that she is all bark on that score.  Because of Elizabeth’s conditions (such as we know them), she is not sitting up yet on her own.  Put in its most basic terms, Elizabeth is missing several parts of her brain and what is there is severely under-developed.  Medically, Elizabeth should not even be able to vocalize sounds or perform basic cognitive functions. She was expected by doctors to be vegetative (at best) for the duration of her very short life.  She would never sit or stand or talk or even “engage” with people.  Her brain just simply could not perform these tasks due to the severe under-development and anomalies present.    But, apparently, those doctors and experts forgot to tell Elizabeth what her limitations are.  So, we now have physical therapy several times a week where Elizabeth puts weight on her feet, sits (supported) in a Johnny Jump-up, holds up her head for periods of time, opens and closes her hands and reacts to tactile sensations (soft blankets, crinkly paper), all while vocalizing in no uncertain terms that she is both aggravated at having to perform tasks, but also thrilled to be engaged.  No one (and I mean NO ONE) who has ever been with her at one of these sessions would ever say that she is vegetative in any way.  The diva is always present and more than willing to let everyone know exactly how she feels about whatever is going on!  (And we all love it!)  The therapists are amazed and excited by her progress.  And, we will continue to push Elizabeth so that she can show us all how far she can go.  We have come to realize that God sets limits—not people.  As long as we don’t buy into the naysayers and logic priests—those who swear that science says it  just “can’t be done”--and learn to rely on what God is directing us to achieve, I think we can see the bigger Plan at work.   Now, we know that Elizabeth has limits, but we refuse to limit her.  There is a difference.

Now, please do not think that my last statements are indicting the medical community in any way.  We have been blessed—truly blessed—with the most amazing medical team of highly trained professionals we could ever ask for.  We treasure their guidance and wisdom.  Our pediatrician and the nurses at his office are like family and we trust them implicitly.  They serve a vital and essential function in Elizabeth’s care.  But, all of the doctors and nurses—from pediatric hematologists to neurologists to geneticists to endocrinologists to surgeons to pediatricians—to a person—would say that Elizabeth is a great mystery.  God formed her exactly as He wanted her to be in the womb, but apparently He decided to use a completely new and unheard of form to do it.  We have consulted with the best of the best in pediatric neurology with Elizabeth and all they can say is that they have never seen anything like her.  She bucks every expectation.  She is not following any rules for neurological development.  We have had her tested to the ends of medical science for genetic anomalies, trying to find the “source” of her issues.  Nothing.  They are apparently creating new tests for genetic review to try to find the source of her medical situation.   (Pssst… really smart medical geneticist guys and gals…It sounds a lot like “God”!) 

All in all, Elizabeth is a “question mark”--as one doctor put it. “We don’t have any charts to put her in, because she doesn’t follow any of them.  We have no idea what to tell you to expect next.”  As a parent that is highly frustrating, but also totally and supremely cool!  Elizabeth and her situation have been clearly created to give us the message that God is writing E’s story here, and we can’t read ahead.  We should just enjoy what we are seeing—cherish the moments--and not worry about the future…God has it in His control.  Don’t miss the blessing for the worry.  If we truly give Elizabeth’s well-being to God—if we truly believe that He created her with a unique ability to tell (without any words) a glorious story of His faithfulness and wonder—then we should allow Him to work through her—and us—to do it.  There’s a lesson in there somewhere, I just know it!

So, we have embraced the question mark.  We continue to try to find solutions and ways to allow Elizabeth to thrive, but we are also allowing ourselves to find ways for Elizabeth to sing out her story.  She has personality for days and in every motion and action, she is telling of the wonder of her Creator.  We just have to listen with new ears.  For example, Elizabeth is a master communicator.  Even though she has never spoken a word, she is able to get her point across to all of us in the family with clarity.  She taught herself her own version of sign language to help us silly parents understand what she needed.   Apparently, we weren’t performing as efficiently as Elizabeth expected!  Months ago, she started to make a fist with her right hand and swipe it across her mouth slowly.  That was the “Sign” that she was hungry.  Depending upon whether or not we are paying attention, Elizabeth will do this sign with more “drama” to make her point.  She will start to swipe the mouth rapidly if she wants us to pay attention and get food for her quickly.  If we are not moving fast enough or have seemed to not respond to her demand, she will move her hand deliberately v-e-e-r-r-y  s-l-l-o-o-o-w-l-y across her mouth as if to say, “Hey, guys!  Here’s a dramatic slo-mo version of what I want! “   See?  All diva.  But, that’s not all.  A little while later, she taught herself to make a fist of her left hand and do the same swiping motion over her mouth if she wants her pacifier.  And, woe be to you if you confuse her “hungry” sign for her “pacifier” sign!  I mean, it’s different hands, folks!  How hard can this be?!  Now, let’s unpack this a bit.  For those naysayers, this is impossible.  Elizabeth supposedly does not have the brain function or neurological development to cognitively “figure out” how to develop a hand motion that asks for a distinctive thing.  Plus, to manage and manipulate the sign to express emotion or indicate imperativeness--that’s just simply not possible—within her human-created limits.  But, she’s doing it.  Every. Single. Day.  And she taught herself to do it.  Hmmmmm…could maybe God be giving us a wink here?  Just asking. 

And, as if to show off a bit, Elizabeth has made up a new sign.  Now that she is back on the bottle, she does a different sign for when she wants a bottle.  She makes a fist with her right hand (the “food” hand) and puts it up to her mouth and, then sticks out her tongue and touches the tip of her tongue on her hand.  And she leaves it there until you see or acknowledge it.  Wow.  That’s some multi-level cognitive thought right there!  Then, if you don’t see this sign (and it is cute beyond words, by the way!) she will begin the next level of demand. To get your attention, she will smack her lips (as if to say, “Hello?!  Um…people, I’m hungry here!  And now I’m going to show you what I want!”) Then she will dramatically do her sign for “bottle” again.   The girl is all attitude—and I think she would be a killer addition to any charades team!  This makes Kathryn and I so happy and amazed that we even have come up with a special “sign” for those sad, faithless doctors who told us that E would be a vegetable—I kid, I kid.

But, what all of this has shown us is that God’s wonderful grace—His beautiful way of showing us in the littlest things that He is here with us—is always present and very tangible.  Elizabeth and the way she was perfectly made has forced us to slow down, push away the cacophony of life, and listen to the daily miracles of how Elizabeth can communicate to us.  She has special smiles (distinctly different) for her brother and sister.  She loves both of them fiercely and simply cannot get enough time with them.  Caroline is quite the mother-figure.  She loves to cuddle with Elizabeth and do her hair—all the while talking to E about her day and what is going on in the dramatic world of a 2^nd grader.  Recently, Elizabeth has been put to work by Caroline to play “school” or “shop” with her.  E is the student or shopper and Caroline constructs these elaborate situations that Elizabeth is able to participate in with aplomb.  They can spend hours up in Caroline’s room just playing and listening to Caroline’s ubiquitous Taylor Swift CD.  E loves this time and soaks it up.  Michael has a slightly different relationship with his “LeeLee Girl”, as he calls her.  He is funny and likes to make E laugh.  He has now taken up the rather startling habit of being our “baby bandit”.  If E is sitting in her bouncer or laying on the couch or bed and Kathryn and I should step away for a second, Michael will get her out of where she is and carry her over to another location (a couch or bed) so that they can play and talk.  All the while, E is giggling and laughing, loving the rebellious nature of this act.  Kathryn and I are a bit less enamored with Michael’s antics and are constantly hovering to make sure he doesn’t get in over his head with the bandit-ing.  And, that just makes E and Michael laugh more.  Michael is also VERY protective of his LeeLee Girl.  If he is with any of us and E is not around, he insists on knowing where she is.  He refuses to leave her in any room alone and is always checking on her (even when she’s asleep!)  Even at a precocious five years old, Michael is also very sensitive to Elizabeth’s health and is constantly worried if she coughs or sneezes (which we think Elizabeth does on purpose sometimes to get Michael’s attention!)

Another wonderful aspect to Elizabeth’s relationship with her siblings is how seamlessly they have allowed their friends to meet and play with Elizabeth.  Anyone who has spent any time with our family knows that there are always several “extra” kids over at our house at any one time.  Michael and Caroline have been so blessed with wonderful friends who are always over playing and adding to the joyous “noise” of a busy life.   But, one of the most beautiful aspects of this has been to see these friends easily and unabashedly embrace Elizabeth and her situation.  They always have questions—which we gladly answer—and yet they accept Elizabeth and her “difference”  with a casual shrug of their shoulders and incorporate Elizabeth into whatever they are doing.  The girls love to have Elizabeth in Caroline’s room to dress up and do her hair, be a student when they are playing teacher or be the damsel in distress when they are playing princesses.  To them, Elizabeth is just one of the girls and that is simply awesome.  Michael and his boys always let Elizabeth hold their Lego ships that they build or watch them play basketball.  Michael includes Elizabeth in their play so naturally that the other boys see nothing weird in it at all.  I am so proud of Caroline and Michael and how they have made it a point to include Elizabeth.  Kathryn and I never had to force them to include her.  We never asked them to involve her in their play.  They just did it.  E is their sister and of course she was included!  To this dad, it brings tears to my eyes to see young children so effortlessly embrace a special needs child as just another one of them.  It manifests hope that maybe—just maybe—their lack of fear of the differences now will help them accept others as they go along.  God has allowed Caroline and Michael to experience something that most adults haven’t mastered.  These two kids don’t have a fear of special needs children—they don’t balk at someone who has different struggles.  As parents we can’t teach that—but we can marvel at God’s grace in letting these two kiddos be exposed to it in a way that is so natural and non-dramatic to them.  It’s just their life—nothing weird about it at all.

One day, I was told an interesting story from one of Caroline’s teachers.  Now, Caroline is a strong, confident young lady, but she is our girl who is afraid of a lot of things.  She doesn’t like people who dress up as characters (the Chick-Fil-A cow scares her to death!  Don’t even get us started on Santa…)  she is afraid of dogs and spiders.  She also tends to overdramatize the fear (as any good eight year old girl will do) and let’s it build on itself until…well, it becomes ridiculous. She is also our rabid rule follower.  She is notoriously shy at school and never speaks up.  It is who she is.  But, one day, her teacher said, the kids in her class were all lined up in the hallway about to go to art or music or something and they had to move to the wall to allow the Special Needs class of kids to proceed down the hall.  The rule at the school is that the kids should never step out of line once they are out of the classroom.  As the sweet special needs kids passed by, there was a boy in wheelchair among them.  A couple of the boys in Caroline’s class were laughing and snickering at the boy in the wheelchair and pointing at him.   All of a sudden, our quiet rule-following Caroline stepped out of line, put her hand on her hip in her best Southern belle fashion, and wagged her other finger at the boys.  She was red in the face and apparently read those boys the riot act about making fun of the special needs boy.  According to the teacher, Caroline said ”You had better thank God every day that You don’t have to be in a wheelchair!  He is just like all of us and is a very nice boy!  You are being stupid!  Those kids are people, too!”  And, with that she turned around and got back in line.  The teacher said that she should have gotten on to Caroline for getting out of line, but she just couldn’t.  The boys were apparently so flabbergasted that they couldn’t respond.  I still smile when I think about that. 

We, as adults, can always learn from how those kiddos react.  Kathryn and I have been overwhelmed over the past two years at how uplifting and generous so many people have been to listen to us about Elizabeth and to embrace the question mark that she is.  We have a strong network of people we can lean on to help and pray.  Now, before this becomes an Up With People rally, I will say, in all candor, that we have also had some people –not many, but some—who have run away or limited their exposure to us since Elizabeth has been here.  The best we can surmise is that Elizabeth makes them uncomfortable or tends to worry them.  While it is disappointing, it is understandable. I think in many cases it is just that Elizabeth and her presence in our family tends to “mess” with those people’s complex and delicately constructed illusion of their perfect life.  It makes them uncomfortable to be faced with something that tends to disprove their ideas of what happiness is—what peace on this earth is.  It is ultimately sad, in my mind, that these people have missed the opportunity to see what God can do and the plan He has for us. (I do find it funny though that these people who run from reality like that are also the most vocal in telling others how to live their lives.  The irony must be deafening!)  We have learned to just move on and live our lives and pray for those who are scared to face what is ultimately “real life”.   We hope that they will one day see how beautiful an imperfect life is, and how that sets up the necessity of God to intervene on our behalf.  None of this happens by accident.  None of this is a hiccup of fate.  And none of us can face any of this alone. 

Anyway, Elizabeth is doing well.  She has had some medical issues recently regarding her blood and its interaction with her anti-seizure medications that necessitated a hospital stay, but all in all, we are doing well.  She continues to amaze us all on her strength, resilience, joy for life, and constant determination.  She is a blessing of epic proportions and daily shows each of us more and more about the heart of God, the wonderful way in which He constructs us to fulfill His will, how His methods may be unconventional, but are always effective and how He truly loves each of us more than we deserve.  The story that Elizabeth is telling is not new.  It has been told many times before.  God has just chosen to tell it in a unique way this time.  It is simply this:  God loves you—completely and absolutely.  He will never abandon you—even when it seems like the world is set against you.  There is always a way to thrive, if you focus on Him and allow Him to guide you.  He places questions marks in your life not to confuse you or frustrate you, but to allow you to embrace them.  Once you do, then you allow Him to work through you.  So, embrace your question marks and know that He will be your guide.  It is liberating. 

So, happiest of birthdays to my sweet, strong Elizabeth Leigh Rowan!  Two is going to be an awesome year! 

Matt, Kathryn, Caroline, Michael, and Elizabeth Rowan

Of Glaciers and Grocery Stores

E-mail of 11-16-2011:

All:

  One day I was listening to my favorite semi-existential Christian folk band (and really, who doesn’t have a favorite one of those?!) and heard a pretty interesting lyric.  Caedmon’s Call sang , “There is a time for wonder—and to wonder why” .  I was struck by that statement.  That sentence stated pretty clearly where Kathryn and I have found ourselves over the past few months regarding our youngest little angel, Elizabeth.  She has been doing so well with her physical therapy and her constant and steady progress had filled our hearts with wonder.  We watched in barely disguised amazement as she continued to confound doctors who tried in vain to classify her according to their finite diagnoses.   She was boldly and unflinchingly blazing her own trail with us in tow, allowing us to see truly the wonder of God’s faithfulness and grace.  It is our time for wonder.  Now, these little moments—these little vignettes of grace—are pretty amazing.  She has started to put her weight on her feet during physical therapy—something that all the doctors—even the most hopeful—had sworn she would never do.  Her muscle tone was just going to be too low, they said…It wasn’t something we could ever even hope for!  And yet…there she was a couple of weeks ago…exhibiting wonder.  Here’s the picture:

She continues to eat like a champ and is slowly—oh, so slowly!—gaining a little weight. It seems after months of experimenting, we have found the right combination of Greek yogurt, olive oil,  formula, rice cereal and various fruits and vegetables  that Elizabeth finds satisfying.   She has also now decided that her hand signal of “eat” that she had taught herself (the circular motion of her right fist over her mouth) was not enough for us dense (and probably sleep deprived) parents to figure out, so she is now making a smacking noise with her lips as well to indicate that she is hungry.  That was not taught nor suggested, she just figured it out.  Let’s camp out there for just a  moment.   Figured…it…out.  This little girl who everyone thought would be vegetative from birth, figured…it…out.   An exhibit of true wonder!  God is no doubt laughing at our looks of shock and awe at Elizabeth’s recent actions.  I’m sure He’s saying, “Well, what did you think I was going to do?  Meet your silly expectations?  I’ve got a bigger, better plan!”    Every day has been one of wonder for Kathryn and I.  We never tire of it, and it never gets old.

But, we are also straddling that time of wondering why…Elizabeth has been relatively medically stable over the last few months and that has given us an opportunity to tentatively try to explore where this journey is headed.  As each of you know, Elizabeth presents a wholly unique set of issues to the world.  No medical professional has ever seen anything like her—so, they can offer no guidance on what to expect or look for as we move down the road.  (Now, don’t get us wrong.  They are more than willing to test and observe her!  She is a part of at least three national case studies and is having her entire genome mapped!  Of course, that doesn’t help us with how to proceed with her, but Kathryn and I are adamant that, if she can help some other child who has similar issues in the future, then it is well worth it.)  The best explanation (read: educated guess) we have received from an excellent doctor is that Elizabeth will remain an infant for the entirety of her life.  That she will, as the doctor put it, “develop and grow at a glacial pace.”  Now, on first blush, that sounds a little…weird.  Bizarre.  Unusual.  And, I will fully admit that, as her father and biggest champion, I didn’t want to hear that.  What do you mean, silly doctor?  This is Elizabeth Leigh Rowan, she can do anything!  She has shown tons of people over the last 18 months that she will not be fit into expected results.  I simply bowed up and fought the analysis.  I was sure I could “defend” her from this frankly silly explanation.   We continued to work with Elizabeth and let her shine every day.  We didn’t push her too hard, but encouraged her to progress. (And, deep down, this dad was cheering for her to leap up and start walking—no, running!—so that I could lift high that rebellion to the doctors to show them that she was not some glacier of a person who was developmentally delayed.)  I refused to accept that Elizabeth’s development would be glacial and slow—that wasn’t how I wanted this story to go.  I was stupid.  I see that now.  God was shaking his head at me—wondering if I was really going to ignore what He had told the doctors to tell us.  If we would miss the blessing amidst the frantic attempts by us to “beat the odds”.  I’ll freely admit I wanted to make those moments of wonder that Kathryn and I daily saw and make them more dramatic and wonderful to give our beloved Lizzie the chance to thrive.  But, notice, friends, the pronoun in those sentences—“I”,” me”.  That was the problem.  I cannot cause Elizabeth to thrive.  Kathryn cannot cause Elizabeth to thrive.  Only God can do it.  And ONLY God will do it.  So, I got bogged down in the time to “wonder why”.  It’s a very deceptive place to be.  You begin to try to explain everything, when, really, some things defy explanation.  You miss the time of wonder by focusing on wondering “why”.

So, one night a while ago, I was holding Elizabeth and watching TV when I flipped onto a documentary on National Parks (really good documentary, by the way…) and they were talking about Yosemite Park in California.  They were showing these stunning vistas and landscapes while the narrator was quoting those who were describing the awe they felt in seeing them.  It was equal parts breath-taking and slightly cheesy.  I was transfixed.  And, then the documentary started talking about how John Muir was convinced that these “natural cathedrals” were made completely by glaciers—a pretty controversial idea at the time.  There was that word again—glaciers.  I looked down at Elizabeth sleeping on my chest and shook my head.  “Glacial growth, my foot!” I thought.  “This girl isn’t carving mountains out of rock…” and then I stopped myself cold.  In that moment, I saw the right orientation of that statement from the doctor.  In that moment, I saw the futility of my refusal to see Elizabeth as she was created. 

You see, Elizabeth has been created by God with myriad unique issues.  Some of those have caused her growth –both physical and neurological—to be inordinately slow.  Her muscles are developing at a much slower pace, her size is akin to a six-seven month old baby (rather than 18 month old) and she has not yet reached certain milestones of a child much younger than her.  She is in constant physical, occupational and speech therapy to strengthen her muscles and encourage her to sit up.  She tackles each of these with a joy and spirit I cannot comprehend, but am hugely proud of.  While we know that God can give us miraculous results, we also know that He already has done so with Elizabeth’s mere presence.  He has created her to have glacial growth patterns and development.  And, that is beyond awesome…it’s simply amazing!  God had made Elizabeth EXACTLY as He wanted.  He had formed her to develop at a much slower pace than we silly humans are used to.  He made her to have “glacial” growth.  But, that is another of God’s wonderful gifts that he has bestowed upon Elizabeth.  Some would choose to see it as odd, different, even weird.  But, we choose to see it as a beautiful expression of God’s wisdom and grace.   Just as glaciers slowly grind away over centuries on hard, unforgiving rock to carve out stunning vistas and inspiring scenes, so, too, is God using His little “glacier” to work in small, but steady ways on hard, rocky hearts to carve out those mountains where each of us can stand to be closer to God.  Her growth pattern has forced each of us to slow ourselves down a bit and watch as God works in small, but dramatic, ways through Elizabeth to exemplify the wonder of her creation and, thereby, allow her Creator to receive the praise.   And, like that glacier, Elizabeth can seem calm and peaceful on the surface—cuddling with you, catching a quick nap, or just looking around with those big blue eyes—but I know she is grinding away underneath with a strength and fortitude I wish I had.  Nothing stands in the way of this little girl.  She is on a mission.  She has things to do, obstacles to overcome, mountains to carve. 

So, that brings us to the grocery store.  Kathryn and I marvel at how many times a week we go to the grocery store for “just a couple of things”.  With three kiddos, it seems we are always out of just the thing we need.  Thankfully, a new grocery store opened up near us a few months back, so we are always zipping in to grab something.  As Elizabeth is always up for a road trip, we usually take her with us.  Invariably, every time we go and take Elizabeth, we get caught up in a conversation with a complete stranger.  It never fails.  The conversation ALWAYS starts like this”  “Oh, what a cute little baby!  She’s so little!  How old is she?”  Kathryn and I both usually tense up a bit when this happens.  We shouldn’t, but we do.  Elizabeth gives this stranger her best 100-watt grin and turns on her charm full blast (as if to tell us—“Dad and Mom, I’ll put on my best show to reel them in, but you’ve got to set the hook!”)  We then respond that she is 19 months old.  That usually quiets down the stranger a bit.  There is that look on their faces that is a mixture of surprise and pity.  Confusion and curiosity.  “Oh!” They’ll say. “Was she premature?”  I cannot help but  laugh a bit at this response.   Yes, ma’am, Elizabeth was 13 months premature!, the sassy, cynical person in me wants to say.  But, I don’t.  That’s not why God put this person here to talk.  So, with that intro, Kathryn and I start to tell about Elizabeth and the quick version of her story.  We tell this stranger about how God was bigger than a scary diagnosis, how God is working in her and through her now, and how we have to rely on Him in everything.  Kathryn is MUCH better at this than me.  She is simply stunning in her wonderful way of sharing the amazing journey of Elizabeth.  Most times, we have that poor stranger (who just wanted to get some chips and a salad) in tears as we share about Elizabeth.  And, every time, our little glacier is smiling and cooing and batting her eyes—putting on her best show! (But, underneath, now I know that she is grinding away at the hard heart of a total stranger…doing precisely what God made her to do.)  You see, God has put our whole family in a place that we never thought we would ever be.  He took two very private parents, who were timid and quiet in regard to our faith and the sharing of the same, and have made us bold advocates for the miracle of God’s perfect plan.  He has taken two wonderful and vivacious children who were scared of many things and made them brave, strong, mature protectors of their little sister.  He removed from them the world’s manufactured impression of fear and trepidation of things not understood and different and replaced it with a calm, peaceful acceptance of all people as creations of God.  He has exposed to us that we can truly do tons of things we never thought we could if we just lean on Him.  He has slowed us down from the hectic pace of life to see the wonder in small things.  He’s allowed us to see the opportunity in an innocent question in a grocery store to let our little glacier grind forward.

So, as we find ourselves in that strange intersection of a time of wonder and to wonder “why”, we can only hope that our journey can help others see that no matter what life deals you, you have a  winning hand.  Elizabeth is such a blessing in our lives, and she daily reminds us that “limitations” and “delays” are just words.  That proper “development” is a very deceptive ruler with which to measure success.  That God is in control, and He does nothing wrong.  And that glaciers are pretty awesome sculptors! 

Our sincere thanks to each of you for your constant prayers, words of encouragement, kindnesses and unfailing support!  Thanks is never enough, but we do truly mean it!  Our best wishes to each of you for a wonderful Thanksgiving—we all have much to be thankful for!

Wrinkles...in time.

E-mail of 9/27/11:

“Consider it all JOY, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”

--James 1:2-4

“From underneath the rubble/ sing a rebel song”  Coldplay,  Every Teardrop is a Waterfall

 All,

    Lissencephaly.  There, I said it.  What a silly sounding word!   It is hard to believe that this one ludicrous word has been such a shadow over Kathryn’s and my thoughts over the last twenty-two months.  But, it has.  It has been the “big bad” in our lexicon—so much so that we would never refer to it, except as the “L” word.  Back in January 2010, we first heard that word in a cold, dark basement office of a radiologist in Dallas after Kathryn had received a fetal MRI.  We were scared and uncertain about what the future held with Elizabeth--clinging to each other and most of all to God—hoping beyond hope that the problems seen in Elizabeth’s development were nothing serious , but we had never heard that word.  And then…”What we see here is that her brain is not developing.  There are no signs of any gyri or sulci anywhere.  This is serious.  There should be lots of gyri forming.  We call this “lissencephaly”.  It is not good.”   And the hammer fell.

  Now, I always hesitate to try to explain medical concepts with any deep accuracy, as I will no doubt get it embarrassingly wrong. (And, I also know that many doctors read these e-mails and snicker at my medieval attempts to describe their intricate science…there is a reason I went to law school!)  But, here goes:  Lissencephaly is a condition where the gyri and sulci (wrinkles in the brain) do not form.  It is often called “smooth brain syndrome” or referred to as “smooth brain”.  In other words, if you looked at the brain of a sufferer of this condition, it would look smooth and round as opposed to the wrinkly form we are used to.  This is very significant, as the gyri and sulci (wrinkles) in the brain provide for much more mass and surface area for neurons to form.  We need these wrinkles as they allows the brain to have much more density and surface area than its size would normally allow.  The more surface area, the more brain mass.  The more brain mass, the better the development of the brain.  As brain cells only exist on the surface of the brain, the more surface area the better.  I have had it described to me that if you folded up a piece of paper with writing on it, the same information would take up less actual space than a flat piece of paper.  We want wrinkles—we need wrinkles.  If we don’t have wrinkles in our brain, development will be significantly delayed or stopped.  Significant problems can occur and neurological development is hampered.  It is not a good thing at all.  Further, it is not something you can “fix”.  You cannot make a brain form gyri and sulci.  Also, when a baby is developing in its mother, the first “fold” of the brain usually indicates that the gyri and sulci are forming.  This first fold usually takes place in and around the 18^th week of gestation.  It is imperative that the brain begin to fold to initiate the process.  We had Elizabeth’s fetal MRI at week 26.  No folds were found.  Her brain was not forming gyri or sucli.  Therefore, we were given that word to consider:  lissencephaly.

This was one of many words we got to learn after the MRI.  As you all have heard many times, there was a veritable constellation of issues with Elizabeth’s neurological development found on that silly MRI.  This was just one of dozens of issues.  But, it was the major one.  It was the one that concerned the doctors most.  And, once Kathryn and I did what we were told absolutely not to do—get on the internet to research—it terrified us.  It became the “L” word.  It became the “big bad”.  And, it became the focus of our fervent prayers.

I simply cannot really describe the next three and a half months in any way that would encapsulate the maelstrom of emotions Kathryn and I felt.  Every day we tried to go on with our “normal” lives—raising our two wonderful children, get everyone where they needed to go, work, etc.  And, usually, Kathryn and I could tamp down the sheer terror during the day—when the cacophony of our lives kept us from visiting that well of worry.   We prayed that God would take the burden from us so that we could do what was best before Elizabeth arrived.  It would do us no good to worry about it.  We shared our worries and fears with our family—really only detailing the exact fears to those beloved and trusted prayer warriors who we were blessed enough to be related to.  And they lifted us up like no other.  But, then, night would come—the kids would be asleep and Kathryn and I would sit down to enjoy the silence—and the ever-present fear would erupt.  The weight of the diagnoses would fall and we would succumb to the worry.  I thank God every day I had Kathryn to hold during that time.  It was unbearably hard.  We prayed—no, we wailed—to God to please fix Elizabeth.  To initiate the development of those wrinkles.  Because ONLY He could do it.  Medically, Elizabeth’s die was cast.  But, we knew God was bigger than that. (And I think Einstein even said something about Him playing dice!) Every night,  Kathryn and I would desperately beg and plead God to do His will with Elizabeth—to provide a miracle of perfect healing of her brain as a testament of what He could do.   We put that lambswool out every night hoping for a rainstorm—knowing God could do it—but, you know, God had already done that with Gideon--and He had other plans. 

There is nothing worse than a feeling—as a father and a VERY Type A “fixer” to boot—that you are simply unable to do anything to help your child.  But, there I was, every night, holding my wife’s strong hand and weeping over wrinkles in the brain.  The fortress of peace and control we had built around our family was crumbling—building piles of rubble around us—threatening to bury us in the remains of our false sense of security.  It was an unfathomably hard time for us—daily getting up and doing the normal things of life—trying to project a strong, calm image to our kids to keep them from knowing the terrifying things we knew.   That stupid “L” word.  It hung in the air around us—always in our line of sight.  But, God was working…He always is.  While it was a horribly dark and difficult period for us—it was also a time of great blessing.  Kathryn and I both grew in our faith—it became real, tangible, essential in those days.  We learned that we couldn’t do this alone—or even together—we had to lean on Him fully.   We struggled to find the joy in the trial—to strive for the endurance and its perfect result.   Some days we were better at it than others.   Some days the joy seemed very well hidden.   But, through it all, we both became more bold and clear in our desire to tell others of how we were able to even stand up then.  We were able to see the big picture of this time during it—and that is rare.  We were learning to accept and even appreciate the rubble building around us.

So, Elizabeth arrived in April 2010 and astounded the doctors in myriad ways.  She was a testament to God’s amazing and miraculous ability to teach us about relying upon Him and that his perfect Will is always exactly what we need—no matter the package or the seeming “limitations” set up by man.  Kathryn and I have tried to tell that story as much as we can, because it is glorious.  Like I had said, God was working in that tough time to form Elizabeth exactly as He wanted to.  We love her exactly as she is—no exceptions.  She has beat many expectations and continues daily to show us that the grim discussion we had months before in that basement was merely an imperfect person trying to describe a masterpiece being painted.  Now, many of the things discussed in that basement were correct.  But, the thing that wasn’t immediately present on that MRI film was the hand of God at work.  He will not be limited.  He has a bigger narrative to tell.  He will use whatever tools are necessary.  And He will do it on His timeframe.

So, we fast forward to a couple of weeks ago.  Elizabeth has been doing really very well.  Ever since she had her second MRI (in July), she has been eating well and often.  She is gaining weight a bit and looks healthier (at least to this Dad).  She is much more vocal and has no problems expressing herself.  She has started a second set of physical therapy as well as speech therapy (to help with her swallowing).  She is responding well to this new activity and seems to be gaining strength.  It is slow going, but we are progressing well.   Her hemangioma has healed (a.k.a. LaserFest 2011) and we are enjoying her regained love of sleeping on her stomach.  So, we went to see her pediatrician for her 17 month check-up/well check.  (As an aside:  her pediatrician has been simply wonderful through all this.  He is a superior doctor, and a great person to boot.  We consider him almost family!)  Anyway, Kathryn was in the office and our pediatrician came in.  “I’ve got the results of the MRI y’all had a few weeks ago.  Did you all go over it?”  Kathryn said that we had received a very basic initial report the day of the test, but had not gone over the full report.  “Well, let’s talk about  few aspects of it”, he said.  Kathryn bristled.  Understandably, we are a bit sensitive to MRI results and discussing results.  We remember all too clearly the rubble we were buried under the last time we talked about MRI results.  And, then, our pediatrician shared with Kathryn that the MRI report was interesting in that the radiologist had reviewed Elizabeth’s film (and then had done it again, and asked for several others to do so) only to find that this picture of her precious brain contained multiple distinct wrinkles.  Yes, wrinkles!  Gyri and sulci!  In fact, the report (which we have a copy of to review in case we begin to disbelieve it!) states that there are significant enough signs of gyri and sulci on the surface of the brain that the radiologist cannot, in all candor, call Elizabeth’s brain lissencephalic!  So, she has wrinkles on her brain--not as many as we would like—but, they are definitely there.  We were floored.  Simply speechless. 

God heard our tear-filled prayers those many months ago.  There is no other explanation.  He folded Elizabeth’s brain when He wanted to…at a time when it simply could not be done—except if He wanted it to.  And, then He waited.  Waited to show us the miracle until after we had already seen so many others.  Waited until Kathryn and I had moved on down the road of our journey with Elizabeth where that dreaded “L” word held less terror in our lives.  Waited until Kathryn and I were in a place where we could appreciate the miracle for exactly what it was—and the importance it held.  You see, Elizabeth hasn’t changed since we found out about the MRI report.  She still is amazing and wonderful.  She still has hurdles to overcome.  Nothing has changed.  But, it was a simply beautiful statement from God that while He was forming sweet Elizabeth with attributes and abilities we didn’t even know to ask for—preparing that little diva to emerge ready to blow away expectations in tons of ways—and preparing her parents to listen for the miracles great and small—He was also simply and profoundly answering the fervent prayers of His children.  He was listening to the rebel song amidst the rubble.    He knew that if Kathryn and I had known of these wrinkles at the time of her birth or soon after, we would miss the amazing story of Elizabeth.  The “L” word lost its power when overshone by the perfect creation of Elizabeth.  It became just a word…a meaningless diagnosis that did not define who Elizabeth is.  It was relegated to its proper place in our life. 

And, we needed to go through what we did (with the “L” word in its falsely magnified state) to allow God to teach us lessons about faith, strength and true hope.  You know, many people have told Kathryn and me, while trying to comfort or encourage us, that God never gives us more than we can handle.  While I know this was meant well—it’s just wrong.  God always gives us more than we can handle.  Because the lesson is to give the excess to God.  We silly humans simply cannot handle the things we are given—they seem overwhelming because they ARE!  But, if you give things over to God and let Him carry the burden, it is truly amazing what you all can do!   So, God always gives us more than we can handle—it’s what we choose to give up that speaks to our success.    Only after all that—after we had imperfectly dealt with the existence and reality of the diagnosis, and come to understand the peace that God had given us about it—did God pull back the curtain to let us see the deeper miracle within.  Only after Kathryn and I realized that Elizabeth didn’t need to be “fixed”—that she was perfectly made by God—did we get to see that God had indeed moved as He saw fit.  Only when we could see that an answer to our pleas as prayed over those three months wouldn’t really cover the fear or calm the storm, did He expose that He had done as we had asked—and more.  

It is also hopefully  a clear and unambiguous example to each of you who have spent so much time and effort in prayer over Elizabeth that your prayers have been heard.  Kathryn and I are unable to really express in any coherent way how much each of your thoughts and prayers mean to us, but maybe this little vignette can serve to speak to you in a way we never could that there is hope in those prayers—there is power in petitioning God.  We have seen it and continue to see it.  And our prayers continue to flow for Elizabeth—but now, hopefully, we can focus them on things that will not only help her, but will serve to tell the bigger story as well. 

Kathryn and I hope that these little updates serve to show each of you in some little way how amazingly encouraging this journey is.  There is always sunshine behind every cloud.  There is constant joy in the journey.   Everyone has stuff—your own personal “L” word that you try to tamp down or fight, your obstacle to overcome—the situation is in no way unique, though it may come in a unique package.  But, lift up your voices in a rebel song beneath the rubble, and you will be heard.  And then you will be blessed by the perfect answer…all in good time…wrinkles and all.

Matt, Kathryn, Caroline, Michael and Elizabeth Rowan

The Medical Mystery Tour

E-mail of 8/3/2011:

Friends,

Doctors are wonderful.  Doctors are smart.  For the most part, doctors have the ability to encapsulate so much complicated medical knowledge in a way that we plebian commoners can understand what is wrong with us.  They help us heal.  They suggest healthy options.  Doctors have a vaunted place in our society—and rightfully so—as our modern day oracles of health.  And, over the past six weeks, these same “oracles” have stood before Elizabeth and shrugged their collective shoulders.  She completely confounds the best of them.  She amazes and confuses them.  She does not follow any textbook, study or diagnosis.  She has been blessedly, brilliantly, and boldly exhibiting the miracle of her creation for them to study—and probably laughing at their looks of confusion and wonder.  It’s been a busy six weeks, but a pretty cool time of seeing God’s “logic” among the furrowed brows and shrugging shoulders.

First on the tour was a follow-up appointment with our super-duper neurologist/geneticist (rare disease guru) in Dallas.  Elizabeth had had labs taken to send off to the University of Chicago Genetics Lab to perform some pretty intensive genetic testing to see if there was some sort of anomaly that would help us find out what was causing the developmental and neurological delays.   Now, let me step back just a bit and explain this “taking labs” thing.  Basically, you have to take Elizabeth’s blood to send off to test.  For reasons not completely clear to me, they apparently want to take as much blood as humanly possible to accomplish this.   Elizabeth is also very adamant that no one should take blood from her.  Ever.  She is notoriously hard to even find a vein to accomplish this with.  This time, the “pro” at Children’s Dallas shrugged  off Kathryn’s and my warnings that it may be harder than normal to find a vein, because she “does this all the time, and has seen everything”.  Yeah, right.  Well, sister,  you haven’t seen anything like E, and well… just go ahead and poke her and see what happens there, Needle Ninja.  Sure enough, no blood--and one EXTREMELY ticked off diva.  How’d that work out for you, pro?  Once again, my wife kindly suggested that they needed to take blood from the top of her hand, but Madame Sticks-a-Lot just said that she knew better.  So, she called in some middle linebacker to assist her and once again tried the “pro” sticking method.   Well, that was a  dry hole and E was moving into full plate-throwing meltdown mode.   At this point, Stab-itha expressed her confusion at why this wasn’t working.  Kathryn snapped, “well, if you would try the top of her hand…”  Finally, the tech rolled her eyes at us hayseed parents who obviously didn’t know the first thing about blood drawing, and just to placate us, decided to try our crazy method.  Well, what do you know?!  Blood flowed forth.  Gaw-llee, I guess us backwoods parents aren’t as stupid as she thought.  Mollified, she gave E a princess sticker, E gave her a look that would fell small animals,  and the blood was off to the lab.

A few weeks later, we received an e-mail from our geneticist with the lab results.  In it, he said that the tests had ALL come back completely normal—there were no mutations.  Further, this last round of tests was the absolute last set we could do, because we had completely tested each micro-array of genes that are available.  In other words, we had reached the “end of the Internet”.  There were simply no more tests we could do.  So, in essence, there was no indication of any mutation or anomaly in her genes.  Our super-duper neurologist/geneticist was simply stumped.  He said that until medical science was able to come up with some new and more intensive tests, we were simply done with trying to find a genetic link.  Now, this is both frustrating and awesome.  It is frustrating to us, because we would really like to have a diagnosis—some diagnosis—to work with for E.  We know she is unique and awesome, but we would really like to know that someone has seen something like her before to know how best to care for her and what pitfalls to look for.  But, no such luck.  God has other plans.   The result is also awesome when you look at it, because it simply and clearly points to the wonderful way God created this little lady.  I have said before that we are certain he created Elizabeth perfectly—we are just trying to figure out what “perfect” is.   We had performed every test in such amazing detail and with such specificity that you should be able to see what was going on with her.  But, God, in all His wisdom, has hidden the map pretty deep-knowing that we would reach our technological and scientific limits well before finding it.  It is almost like He is once again saying, “ Matt and Kathryn, trust me.  I know what I am doing and what I did.  Don’t look for the problem.  Just acknowledge the miracle.”  Pretty cool.  We have to quit searching so hard for the “answer” so that we can stop and see the wonder of having to totally and completely depend on Him for guidance.   We have to know that this is Elizabeth, not some amalgamation of syndromes and mutations.  Somehow, it makes this so much easier-- and at the same time exponentially harder—to know that we may never know what Elizabeth “has”, but can know with definite clarity who Elizabeth “is”.

So, later that same week, we had a yearly check-up with her pediatric neurologist (different neurologist than above—this one is in charge of prescribing her seizure medications and monitoring her epilepsy).  In all candor, this was more like a fifteen month check-up, as we really had not been medically stable enough to get her there for this appointment earlier.  We arrived and Kathryn went back with Elizabeth, while I waited for them with the other two kiddos.  (The older two kiddos went with us this time which was great, as Elizabeth pretty much worships these two and is very upset when she is not able to be around them all the time.)  Our neurologist is very nice and a good doctor, but he is a bit socially…awkward.  He is undoubtedly brilliant, but does not have the basic tact a regular human has when having a conversation.  Not a big deal, just the way it is.  So, he entered the room and greeted Kathryn with, “I’m really glad to see Elizabeth.  I wasn’t sure she was going to be around this long.”  Yep, ladies and gentlemen, the doctor just expressed his shock that Elizabeth was still alive.  This appointment was going to go GREAT!  He explained that, since Elizabeth is on some pretty heavy and strong anti-seizure medicine, her liver would have normally shown signs of failure.  In fact, he added to his sunshine explosion by saying that he had never seen a child with only some of the things Elizabeth has live this long and exhibit no signs of liver problems.  And, yet, here we are, Doc.  E’s liver is fine and she has shown no signs yet of problems.  He was needless to say shocked and stumped.  We truly know he meant well, but it was a bit of a downer.  Then, Kathryn and I started talking and realized how—looking at this from another angle--this visit was really a huge encouragement.  God once again was telling us through the stupefication of the doctors that Elizabeth is purely His and in His care.  He is watching over her, and I really don’t think He cares too much about what is normally expected medically in this situation.  That is cool.  So, we left that visit with another doctor shaking his head in confusion, and with us nodding our heads in acknowledgement of His grace.

The third and final stop on our medical mystery tour occurred two weeks ago.  We once again went to Dallas, but this time we were going to have the dreaded full-body MRI.  Friends, this procedure was one that Kathryn and I had been dreading for months.  An MRI of a child under any circumstances can be hugely stressful, but in our case, we were just now able to do it because Elizabeth had just now been medically stable and big (weight) enough to handle it.  As she was just a baby, they were going to have to fully anesthetize her and that process brought with it some risks.  Our neurologist said that sometimes anesthesia can serve to “re-boot” the brain in neurological cases such as this.  Great, just great.  Further, they were going to do an MRI of both her brain and her abdomen, which took much longer and involved injecting color contrast dye into her abdomen.  We’ve already discussed how awesomely great Elizabeth is with needles and IV’s so, needless to say, that made us doubly nervous.  But, this test was necessary for a couple of reasons:  (1) It would show us the architecture of her brain and would maybe let us know if we were going to be dealing with any other issues (other than the ones we already knew); and (2) would show if she any internal hemangiomas that were ulcerating like the one on her tummy. (oh yeah, we are still dealing with that, too.  Elizabeth gets her laser treatments now about every 10 days!)  Anyway, there was an obvious need for this test, but Kathryn and I had just a bit of trepidation about it.  So, we finally went to Children’s and got our sweet little Elizabeth ready for the test.  When we got there we were told that she was going to be in the tube for the MRI for about 2.5 hours!  Oh, goody.  So, we waited with her until it was time for her to go back there.  I will honestly say that handing her to that nurse was one of the hardest things I have had to do.  I would like to admit to each of you that I was confident that God had her and would protect her, but that would be a lie.  I had allowed that always present fear to creep up and take over.  My mind swirled with silly fears:  she was finally doing so well, why are we doing this now?  What if the anesthesia erases all the work we had done to help her?  What if she had a seizure in the machine?  Would the doctors notice?  Etc. Etc.   I only tell you all that to show how quickly and how easily you can let silly fear creep in and erase any peace you may feel.  It’s normal, but it shouldn’t be.  God had her the whole time and He was in charge.  I need to just let go a bit.  I guess I’ll always be learning that lesson.   So, with two and a half hours to kill, Kathryn and I wandered about Children’s trying to keep our minds off the test.  Riiiight.  But, God used that time, too, for His glory.  We had a wonderful, honest, hard, ultimately hopeful conversation about Elizabeth and were able to really just sit and talk to each other (without the kids and the constant pulls of life).  We expressed our fears and our hopes, took hard realistic looks at where we were with Elizabeth and where, in all likelihood, we would be in the future.  These conversations are all too rare anyway, but that one was really nice.  (I would have liked for it to have been in a more atmospherically pleasing place than the basement cafeteria, but hey, you can’t pick the location sometimes.)  We went back up to Radiology and finally—finally—Elizabeth was given back to us.  The MRI had gone flawlessly and once Elizabeth woke up, she showed no negative side effects to the anesthesia.  God once again showed us that He had her and was caring for her.  (Really, by now, it seems like He’s hitting us over the head with a tack hammer about this, but we seem to need it)   And, guess what?  (I bet you can see this coming a mile away…) the radiologist sent the results to us, and, of course, there were no internal hemangiomas (praise!) and Elizabeth’s brain showed no surprises about its formation.  (She does still have significant neurological issues, but there wasn’t anything that was new or surprising!)  Once again, God says to us,  “Listen, guys, I appreciate the Herculean efforts here, but I’m not going to give you all the medical answer.  Elizabeth is a testament to My creation.  She tells a story of perfect grace in an allegedly imperfect vessel.  Quit trying to figure Me out!  I’ll tell you when I need you to know something.” (Not sure if He actually says that (especially invoking a Greek god and all…)but hopefully you get my point.)

So, here we are.  Sixteen months later, we are still unable to classify Elizabeth on a human medical scale.  She is sixteen months old, is 11.5 pounds, is about the normal size of a three-four month old, has significant developmental delays as well as neurological limits.  But, she is simply amazing.  She is a fighter like no other.  She is fully aware and very responsive.  She laughs, she smiles, she screams, she cries.  She knows people by their voice and responds accordingly.  She has made up several hand signs to tell us what she needs (and did this on her own).  She loves to be with her brother and sister, and is nothing short of astounding.  She can communicate a plethora of thoughts with a single look (just ask Stab-itha!), she has her likes and dislikes just like everyone else.  And, she is loved fiercely by all of us.  She may be a mystery to the medical community, but to God, she is His vessel to share of His perfect grace.  She is a constant source of inspiration to Kathryn and I.  We cherish our time with her and look forward to see how her story can hopefully in some small way encourage others to look beyond the world’s supposed limitations on us and exhibit the gleeful rebellion of pessimistic diagnoses. Elizabeth is unique, but her struggles are not.  We all have “stuff”.  We all deal with stresses, confusion, disappointment, sadness, and anger.  We all have our own circumstances that seem to be uniquely “challenging”.  But, hopefully, in our updates on our Divine Miss E, you can see that everyone’s “stuff” is really  God’s method for showing us uniquely how He is in control.  It’s not always easy to see the method in the supposed madness, but is always rewarding when you do.  

Now, be not deceived:  we know with clear and unaltered accuracy the prognosis and possible likely outcomes regarding Elizabeth.  But, I hope you all will understand if we take those prognostications with just a bit of a grain of salt.  So far, no one really seems to know anything about her, except her Creator.  And He loves her perfectly.   So shall we.

Our best to each of you and our continued humbled thanks (which are not enough) for your constant and vigilant prayers. 

Matt, Kathryn, Caroline, Michael and Elizabeth Rowan

I wanted to include this picture of our little Miss Elizabeth.  When she sleeps, she always has her hand up to her ear, like she’s talking on the phone…And I wanted to brag on those chubby cheeks.  We’ve been working hard on those!

The Waltz

E-mail of 6/12/2011:

“ The waltz is a silly, useless activity. After ceaseless spinning and turning, religious adherence to a repetitive beat, and the unfortunate requirement

to make small talk of questionable wit, you just end up back where you started—slightly winded and dizzy.”--Mikhail Brӧm

  Friends,

   While Mr. Brӧm sounds like a real party-killer, I have found this quote running through my head of late in relation to the continued journey Kathryn and I have been on with our beloved Elizabeth.  I’ll attempt to explain a bit.    Elizabeth is now approaching 15 months old and is nothing short of astounding.  She continues to simply amaze so many people-medical and otherwise-with her stubborn refusal to be boxed into a diagnosis or treatment plan.  I really think that Kathryn and I have almost become numb to the consistently flabbergasted looks we get when we meet a new doctor and they look up from Elizabeth’s voluminous (and, probably, depressingly bleak) chart and see a smiling, cooing, gloriously happy blonde diva.  It must be frustrating for them to have spent so much time learning about all those conditions, syndromes, and mutative symptoms—to have an encyclopedic knowledge of the ways the genetic process could go “wrong”—and be presented with someone who is clearly defiant of all of these learned treatises.  I am starting to think that is the way God likes to work—with His plan in focus He will use whomever He desires to make His point: “ I am in control.  I have this child in my arms.  I will give her the strength to tell my story in a new and unique way—so that you may see Me in her existence.”  Sometimes, I fully admit that Kathryn and I get caught up in the pure chaos of daily living with our three wonderful kids (school, tee-ball, soccer practice, swimming lessons, physical therapy, feedings, homework, doctor visits, etc., etc.) that we miss that message.  Most days we see it and thank God for it, but sometimes we don’t.  That’s the journey, I guess.  1,2,3...1,2,3…

Anyway, Elizabeth continues to grow—slowly, but surely.  For all of you who have been so stalwart and unbelievably kind to pray for Elizabeth on her weight gain, we thank you.  It is working!  (Please, don’t stop!  We will be constantly fighting this battle with her!)  She is tipping the scales now at almost 11 pounds, and her appetite is steadily growing.  As many of you know, we literally fight for every ounce with Elizabeth—we have spent much of the last nine months constantly stuffing her precious face with any and all possible combinations of rice cereal and high calorie yogurt, supplements, cream, vegetables, fruits, formula, olive oil, and anything else that looks fattening!  One day, I got home from work and Kathryn met me at the door looking excited and almost jumping up and down.  “I found some yogurt at the store!” she exclaimed,  “It has 200 calories in ONE little bottle!  And E likes it!”  I look over to our little wonder in her bouncer—bib around her neck—face covered in blueberry yogurt—grinning like a Cheshire Cat.  I immediately turned around and left to go buy as much of the yogurt as I could.  You can’t waste discoveries like that!  (That yogurt is now a foundational ingredient in all of her meals.)  We find ourselves reading labels of everything we buy at the store now—not for nutritional information, but to find the highest caloric foods for E—it’s our new “normal”.    So, in sum, Elizabeth has turned a corner on her eating.    That is completely due to the laser-focused intensity and hard work of Kathryn.  She simply refuses to give up and has found ways to make Elizabeth eat.  And, all that hard work has paid off.  When we went to her pediatrician, we had Elizabeth’s blood work done and she was right on target nutritionally—that meant that the dreaded g-button (a feeding tube in her stomach) was not needed.  It’s the little victories, I guess.  1,2,3…1,2,3…

But, we should have known that once you tamp down one fire, another would spring up.  And, so it did.  About four weeks ago, Elizabeth began to have trouble sleeping—in other words--she simply wouldn’t!  That was undeniably odd.  After a couple of sleepless nights, we began to realize that her crying seemed to be from pain.  (and, this kiddo is no sensitive soul, so if she was wailing from pain, we knew it was significant!)  We finally figured out that what was apparently hurting was her hemangioma. Now, for those of you who may not know, Elizabeth has a hemangioma (raised red mark) on her left lower torso about the size of a silver dollar.  It appeared after she was born, and while it was unusual, every doctor said that it was not painful for Elizabeth and would eventually involute (deflate) and reduce in size.   We were told to not worry about it (riiiight!) and since it didn’t seem to bother Elizabeth, we did shift our focus to other more pressing issues.  To show you all how this tapestry of miracles God has given us are unquestionably related, this same hemangioma is located exactly at the site where we would have to insert a g-button (feeding tube) if necessary.  Because it is there, there are some significant complications that would be involved in getting a g-button inserted.  So, as we were fighting ceaselessly to not get a g-button anyway for her feedings, I called it ”God’s stop sign”.   Anyway,  this hemangioma was now ulcerating and she had multiple ulcers on the surface that were obviously painful.  This just destroyed Kathryn and I.  We literally had to sit holding Elizabeth for a week while she screamed in pain and there was nothing—absolutely nothing!—we could do for her.  It was awful.  Our prayers became more and more desperate to just alleviate her pain.  (Yes, we were seeing doctors about it during that time, but all agreed that we needed to see if the spot would involute before taking any further measures.)  I will fully admit that at this point Kathryn and I began to wonder why God had caused Elizabeth to have so many obstacles to overcome in just 14 months.  It just seemed horribly unfair and mean.  Every time she would bust through a seemingly impossible obstacle, another higher and worse one would spring up.  As she wailed in intractable pain, we joined her wailing as we tried to make sense of this sudden, painful,  and completely unexpected change.  Our prayers focused on simply bringing relief to her.  We weren’t sleeping—Elizabeth surely wasn’t sleeping!—and everyone was on a razor’s edge of frustration and fear.  1,2,3…1,2,3…

In the middle of this maelstrom of happiness and joy (it was a Wednesday), we received a phone call.  Dr. Pascual (the super-duper neurologist who had taken an interest in Elizabeth and was doing intensive genetic testing on her) wanted to see us and Elizabeth in his office on Friday (two days later).  The nurse making the call wouldn’t tell Kathryn why he wanted to see us or what the visit was about.  Great.  Just great.  Our minds swirled with the possibilities.  We are no fools.  Usually when a doctor calls out of the blue and wants to see the patient on short notice (especially a doctor that is notoriously hard to get into anyway) it’s not to just check and see how everybody is doing.  Since we had been without sleep for a week and were trying to console an inconsolable child, our thoughts went more quickly than normal to the bad possibilities. ( In all candor, we try very hard every day to be positive and be filled with the hope we know to be present through God’s grace.  He has supplied with an inexplicable peace about this whole process so we normally  rest in that.  However, this week was not a “revel in heavenly peace” kind of week!)  So, we cleared out the day and let Caroline and Michael be with their grandparents (and those two kids are such troopers!  They took the opportunity to have a fun day with a joy and excitement we loved to see! (though, in all truth, they probably wanted to escape the screaming-in-pain filled house run by those two worry-warts!)) and began a stress-filled drive up to Dallas.  We got to the office and saw Dr. Pascual.  Despite our worrying and stress, he merely wanted to see Elizabeth to get her signed up to be a part of the Human Genome Project and also to recommend a full body MRI.  (While we appreciate all that he does, we could have seriously been forewarned about the subject matter a bit!  I mean, a little note on the chart that this was a visit about future diagnostics would have been awesome, sir! But, then again, I wouldn’t have learned the lesson to lean on God and trust that He is in control.  Man, I just hate life lessons sometimes!)  Apparently, Elizabeth is going to be one of the first in our region to have her entire human genome mapped.  This will help many down the road to be able to find and locate mutations and prepare for what is to come. (On a side note:  While I know many of you are somewhat hesitant about the whole human genome mapping stuff for a host of reasons, I would encourage you to read a great book about the process and its founder, Dr. Francis S. Collins, entitled “The Language of God”…it is truly fascinating and very faith-affirming!)  Also,  Dr. Pascual looked at Elizabeth’s hemangioma and said what we had been afraid of for a while.  He was adamant that we needed to start laser treatments on it to stop the ulcerations.  These treatments could make the ulcers worse (you basically zap the ulcers with a laser to encourage them to close up…it has a possibility of causing more pain and making them open up more…(sorry, doctors, if that is a bad description, but it was what this silly non-doctor dad heard!)).  So, we faced a big decision—do we have the laser treatments and risk significant  additional pain for Elizabeth and possible increase of the problem, or treat it as we were and hope that the topical treatment would cause it to involute?  Yeah, those are the fun Friday night decisions we get to make now…don’t be jealous!  1,2,3…1,2,3…

At our most desperate point (isn’t that usually when God works His best?!), our dear and trusted friend—who also is a dermatologist—and who had been treating the hemangioma for a week or so to try to avoid having to do the invasive laser treatment--finally did the perfect thing for us.  She was talking to Kathryn about all of this and Kathryn was presenting all the back and forth we were having.  Then, our friend put everything in perspective.  The topical stuff wasn’t working (insert sound of Elizabeth’s constant screaming in pain here), we needed to do the laser treatment to give Elizabeth an option.  We owed it to Elizabeth.  And, plus, we can’t live in fear of possible bad results when we have our loving God supporting Elizabeth.  The bad results may happen, but when there is no other option, the decision is made.   That did it.  Kathryn and I snapped out of our indecisive funk and made the call: Laser it!  So, we did…that afternoon!   Kathryn and I were complete messes—emotional and sleep-deprived.  I’m sure we presented quite a sight at the doctor’s office.  Elizabeth went in—screaming in pain and expressing her displeasure in her best diva manner---and came out of the room after treatment quiet and calm.   Apparently, with Elizabeth, God doesn’t do things subtly.  Since that treatment (and we will have to have more to complete the process) Elizabeth has not been in any ascertainable pain.  She has been kicking and cooing, smiling and very alert.  She interacts with Caroline and Michael and is back to our routine of barely controlled chaos.  She’s back.  All in all, this treatment (this leap of faith) was an unqualified success! (Many, many thanks to the talented doctor who performed this procedure!  It may not have seemed like much to you, but it was a huge thing for Kathryn and I!)   God taught us something through all that:  Trust Him.  Now, don’t walk into decisions uninformed or check your discernment  and curiosity at the door…He wants you to use those attributes He has given you.  Question things.  Learn the risks.  Weigh your options.  But, don’t marinate in the decision and be afraid to move!  At some point, you have to decide—make your best educated decision and trust…truly trust…that God is there to get you through whatever happens.  He doesn’t guarantee a wonderful blessed outcome, but He does guarantee a strong hand to hold you through whatever happens.  Elizabeth has taught us that we can’t just rest on our laurels and hope for the status quo…we have to prayerfully constantly move forward.  The journey is just beginning! 1,2,3…1,2,3…

So, like that silly waltz, we return to the place we began--the quote from the beginning of this e-mail. (If you’ve stuck with me this long…)  During this last few weeks I have felt like Kathryn and I were just spinning around—walking through needlessly complex machinations with doctors and diagnoses, genetic findings and mutations, feedings and seizures—dancing to a tune that seemed both pointless and hypnotic.  It seemed everywhere we turned we found more questions that would lead to more questions that would lead to befuddlement.  Like that quote, we were moving with religious adherence to a repetitive beat—not thinking that we could do anything else.  We became frustrated at the conductor of the music—God—and why He would make us dance this silly dance anyway.  We didn’t understand it.  The more we danced the more we just returned to the place we began—confused and scared, slightly dizzy from the experience and with no forward motion seen.   We have such a precious gift in Elizabeth and we desire so deeply for her to flourish as we think she should that we lose sight of the fact that Elizabeth is not dancing to the same music.  In fact, she has her own dance to learn.  God is crafting a perfect and lovely tune for her.  He has already done it.  And she is dancing to it!   We just need to stop and watch the glory of the performance!  So, you see, that quote earlier by that cynical, bitter man is simply wrong!  The beauty of the waltz is not about where you end up…it’s not about the end of the dance…it’s about the process of dancing.  The joy derived from participating in the actions.  We should not become frustrated with the conductor, we should be appreciative that we can participate and enjoy the beauty of the moment.  I’m not getting all granola and hippie here, but the point is that we should not judge the event by how it ends.  We should rejoice in the journey and praise God that we have music to hear.  And, so our family hopefully will do just that.  Elizabeth’s journey…and our precious time along it…is to be joyfully recounted and used to point anyone wanting to join in the dance to the conductor and the genius sound He has created.  So, get down and boogie, sweet Elizabeth, we can’t wait to see what you can do!

Our best to each of you and our continued thanks (which are not enough) for your constant and vigilant prayers. 

Matt, Kathryn, Caroline, Michael and Elizabeth Rowan