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