Merry Christmas

E-mail of 12/16/2010:

All:

 It has been several months since I updated each of you on the amazing results of your continued prayers, thoughts and unwavering support.  Today is a particularly ironic choice for us to bring this update, as it is the one year mark since we had our initial appointment with Kathryn’s OB/GYN to have what we thought was an innocent and routine sonogram to determine the gender of our third kiddo—and were instead presented with the unimaginable and terrifying four words that—even today—seem to hang in space: “We see some anomalies.”  As each of you know, this single moment one year ago served to bring that always deceptive house of cards that Kathryn and I had built around our family’s health crashing down.  Now, please don’t read that last statement as some sort of negative dirge on our circumstance.  Because, my friends, nothing could be further from our thoughts now. We have a beautiful, vivacious blessing of an eight month old girl in our arms who is an integral (and somewhat diva-licious) part of our family—a strong fighter who teaches me more about how to live boldly and confidently than anyone before her—an innocent vessel through which I daily see the wondrous faithfulness and love of a God who has become more personal to me than ever before.  There are no negative things we can say about where we are—especially when faced with Elizabeth’s silly grin (usually framed by the most obnoxious pink ruffly outfits you have ever seen!).  As I said months ago when she first arrived here to rock our world—Elizabeth was simply perfectly made by God—it has just taken us a while to figure out exactly what this perfect creation entails…and we are still learning new aspects of it every day.

To bring you up to date:  Elizabeth was released from her little spa vacation at Medical City in late August and since then her seizures have been pretty well controlled by her new anti-seizure medications. We have had some periods when her seizure activity was more off-kilter than others, but, on balance, she has been much improved.  To give you a little insight into what “much improved” is:  She only has about 1-2 seizures a day (and these are not usually significant).  While to many that most likely seems awful, it is not anywhere as bad as the state we were facing in August that necessitated her little stay at Medical  City.  Many times the seizures are subtle and only Kathryn and I notice them.  Caroline and Michael (Elizabeth’s proud defenders and somewhat over-protective guardians!) have been nothing short of amazing in dealing with this new aspect of their little sister.  Last night, as an example, Caroline was holding Elizabeth (“Lizzie Leigh” to her older sister) and she had a pretty significant seizure.  Our brave and unbelievably strong eight-year old girly girl just sat there holding Elizabeth as it happened and stroked her hair repeating our little mantra:  “We love you, Lizzie.  We love you.”  Kathryn was right there, and soon Elizabeth emerged from it.  I hesitate to say this is “normal”, but we experience it more often than not.  Caroline just shrugged it off and when I asked her about it later, she just said it was no big deal—she had it covered!  Amazing.  Elizabeth gave Caroline her big grin that she reserves for her beloved big sister, and Caroline just started in again telling E of her day and all aspects of it (last night was about how the Lincoln Memorial is on the back of the penny and that Lincoln has a statue there where he is sitting down…)  Thankfully, Elizabeth listens very patiently, and even seems interested in this wondrous educational opportunity.  Caroline is thrilled to have someone to “download her day” to, and all is well.  Caroline is such a blessing to us, and she is our proud “little momma”. 

In an interesting turn of events, after we regulated the seizure activity and got that under control, Elizabeth apparently felt that she was bored with our descent into barely contained chaos, and decided to throw everyone a bit of a curve ball—she stopped taking the bottle.  Not a subtle gradual reduction in intake to ween herself off of the bottle—no, our little diva just flat out stopped taking the bottle.  Cold turkey.  (At least when she makes up her mind—she unabashedly lets her “no” be “no”!) Now, Kathryn, the steeliest of Steel Magnolias, immediately shifted gears and started to experiment with what Her Majesty actually would take for food.  I will admit that it caused us both no small amount of stress as we tried to figure out this little mystery.  Kathryn, though, was able to pretty quickly ascertain that our little gourmet was wanting to eat cereal with a spoon.  Enough of that baby stuff!  Elizabeth wanted to be a big girl.  So, at the whopping age of five and half months, our blessed little girl who was supposed to be behind and developmentally delayed had just leapfrogged those doubting doctors and decided to take semi-solid foods WAY early.  Who can explain that?  Well, not one doctor or health care professional can wrap their heads around it.  Our beloved pediatrician just smiled and shrugged and said “well, she befuddles me!”  God is pretty awesome.  He obviously was working in Elizabeth on this simple little thing and used a scary and panicky turn of events to show Kathryn and I that maybe—just maybe—we should trust that Elizabeth is fiercely loved by Him and is defiant of being boxed into a normal pattern.  Put differently, her little rebellion—while stressful—was a small example of Elizabeth defying the expectations and showing unabashedly that we should lean on God and quit trying to predict the unpredictable.  This ride with Elizabeth is going to be unique and not according to any textbook or study.  (Oh, and that silly little doctor who told us last January to not even expect to bring her home…I gladly and joyously revel in her mistake!)

So, now our days are filled with feeding Elizabeth her super-fortified cereal mush (supplemented with olive oil and Karo syrup for added calories!) at every turn and getting her weight up…and watching with no small amount of joy at the gradual exposure of a little personality in our little lady.  She is quick to laugh and enjoys nothing more than watching Michael run about and dance!  He is her entertainment, and those two enjoy many inside jokes.  No one can make her laugh like Michael.  Michael’s infectious joy and fun is not lost on Elizabeth.  He loves to make her laugh and always knows how to make E smile.   She follows anyone around with her eyes (tracks) and grips onto her blanket or someone’s shirt like a pro.  She likes to feel her hair and hold hands with whomever gets to hold her.  She is most definitely “present” and does not shy away from letting anyone know her true feelings.  She has most distinct opinions on things and does not hold back on letting us know.  Any of you who have been around her know that she has different smile for different people and it is beyond obvious that she recognizes different people.  She is sweet and loving—enjoying nothing more than being held and cuddling.  Every one of these daily occurrences--milestones in her development into the lady God designed her to be-- were absolutely dismissed by every doctor we visited starting last year before her birth.  We were told over and over again that she would not breathe, eat or function on her own, that her conditions would cause her to be vegetative and lacking in any developmental function.  I challenge anyone who meets her to see those negative predictions in our little blue-eyed diva.  God was holding her in His hands from the beginning—forming her exactly as He wished—knowing that the dire predictions would not only be mistaken, but that her defiance of any expectations would be a glorious testament to His faith and love. 

Now, do not be deceived.  Elizabeth does have some developmental delays.  She does have issues with growth and weight gain—she has some neurological challenges that she is facing.  Her long list of “-ephaly”s and “-ism”s is a bit daunting when you look at her medical records.  But, I would calmly encourage anyone to turn their eyes from that cold medical record that lists terms and names like some laundry list of unachievable obstacles and focus instead with steadfast clarity on the God who made her—who formed her completely with all –ephalies and –isms intact, but also with a soul—an iron will—that pushes past our finite human understanding and beams forth with unexplainable joy.

 Kathryn and I have grown so much in the past year—having to face our worst fears head on, learning to cling to each other—and most importantly our Heavenly Father—in seemingly endless times of uncertainty and negativity, learning far too much about neurological development and genetic/metabolic syndromes (and meeting a cavalcade of interesting and wonderful medical personnel along the way!), leaning on each of you in our support for these crazy times, laughing at the simply unexplainable being shown to myriad people without our effort, embracing our roles as parents to Elizabeth, Michael and Caroline and being fierce defenders of our family and our peace.  We haven’t figured it all out—not even close.  We struggle with the unknown and the fear of constant change.  We have our good days and our bad ones.  But through it all –and in fact, because of it--the unimpeachable peace of God and his comfort has enabled us to not only experience this event in our lives, but to appreciate in some small way the amazing way God works to move us all closer to Him.  This life is not some boring pre-game show before the main event.  This is the testing ground.  You cannot divorce yourself from the hard times and try to revel in just the good times.  All events work for the glory of God.  You may not enjoy them now, but I guarantee you’ll appreciate the lesson later!

So, in that vein, we come full circle back to that scary statement of four words uttered a year ago today: “We see some anomalies”.  Kathryn and I could easily choose to look back on that as the beginning of the fear, uncertainty and doubt…but, instead we choose to look at it as the beginning of a wonderful journey (not yet even close to completed!) of meeting Elizabeth Leigh Rowan and all the unique wonder she brings with her.  We see it as the beginning of a long journey of discovery about God’s faithfulness to us in the midst of unknown fear; the calm loving hand He offers to us to pull us up from our self-created worry; His perfect plan for imperfect people; and His unfaltering glory in all things--no matter how seemingly hopeless. 

 You know, at this time of year, we celebrate the birth of another baby who arrived under much more stressful times for his parents—much more hopeless outlooks on the fate or value of his life—much more restrictive expectations of his role in this world—and we see how God’s perfect plan turned those expectations on their ear in mighty and miraculous ways.  Because of that little baby’s birth, our little girl is a recipient of the grace that baby personified, she is loved by Him now and has hope because of Him.  In fact, we all do!  So, Merry Christmas to each of you!  We rejoice and give thanks even more this Christmas season as we are humbled by the love of the Father.  Thank you for your unfailing support and constant encouragement.  We stand amazed at how blessed we are in every way!

Matt & Kathryn