Peace is a Pink Cupcake Pinata

It has been quite a long time since I posted anything...and that is a GOOD thing! No doubt it is a good thing because each of you have not had to read through my long, often rambling updates heroically trudging through unnecessarily complex paragraphs of varying utility. But, it is even more of a good thing because Elizabeth has been doing so well and getting into such a positive medical rhythm lately that there simply hasn't been any need to post. We, as a family, have been enjoying the ability to live our lives with a sense of "normalcy" and have been a little overprotective of our time. Elizabeth has been relatively stable and we have taken this stability and run with it. We've been getting out and enjoying this year, maximizing our time together and watching with gentle awe at how God is allowing Elizabeth to evolve as a little lady and an essential and foundational part of our little group. She continues to simply amaze and stupefy all who come into contact with her. She remains a diva with attitude to spare, and we have joyfully watched as she has learned to express her opinions as only she can to whomever is around. This past few months have been an oasis of gradual discovery rather than medical panic. It has been nice.

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 E is growing "like a weed" as Michael likes to say. Now, please understand that significant growth for Elizabeth is on a completely different scale than others. Thanks to her "button" (feeding tube) we have been able to be consistent in the amount of nutrients she gets and also ensure that she receives her anti-seizure medicines at the proper times. (Before the "button" she could only get her medicines mixed with her food, and as she was often a bit of a rebel with her eating, we were never sure just how much medicine had actually gotten in...it was an exercise in constant frustration. Now, we have it down to a coordinated ballet of feeding and medicine administration while also juggling feeding (through normal means) the other two kiddos and signing agendas and book lists and permission slips and less than stellar grade papers and attendance policies and anti-drug acknowledgements and poetry club applications and gymnastics shirt order forms and mental institution admission forms... (seriously, though, I feel like all I do at home is sign stuff. Caroline and Michael are learning to be really good bureaucrats).

Anyway, Elizabeth is topping well into the 20 pound range and is getting long/tall. She is filling out her bouncer pretty good now and nothing could excite us more. We know that her growth will always be interminably slow--that she will most likely never get to be bigger than a small toddler in her lifetime--but we thankful for each ounce and inch.

Elizabeth has also been dramatically expanding her communication skills. She is still doing her self-taught sign language for feedings and to tell us that she is sleepy(or trying to fake her physical therapist out that she is tired), but she is really expanding her vocal sounds. In the past month, Caroline has become an absolute favorite of Elizabeth's. Caroline has always been close to her sister, and loves nothing more than holding her and talking to her. Elizabeth eats that attention up. But, lately, Caroline has been expanding her role with Elizabeth and has really stepped up as a "little mother". She is always encouraging Elizabeth and doing some of her physical therapy exercises with her. Caroline like to have Elizabeth play "school" with her and be the student, they watch Disney Channel movies together and generally like to hang out with each other. In acknowledgement of this, Elizabeth has decided to bestow upon Caroline her own "name" that she will only use to call her.  Before, Elizabeth had come up with the name "aboo" to call both Caroline and Michael. She would call out to them in the morning if she hadn't seen them yet, would yell "aboo" to get them to come in the room and talk to her. But, "aboo" was a collective call. Both kids would answer it. It was meant to call them both. But, now, within the last month, Elizabeth has taken to calling out "ka" when she wants Caroline. If Michael should wander in when E is calling out "ka", he is summarily dismissed as Elizabeth feels it is clear she is calling Caroline. This sound is most definitely and without doubt for Caroline only! We can only guess that Elizabeth has thought to use the first sound of Caroline's name "c-a" as her call.

Now, let's hold up right there for just a second--Elizabeth (this beautiful girl who is missing three major parts of her brain--who was thought by every doctor we have seen to be incapable of basic thought, much less complex mental coordination--this amazing soul who is so developmentally delayed that she will "never thrive or progress") has recognized the name that we call Caroline, processed that sound in her own mind, shortened it to use the first syllable, and then reproduced this as a nickname for her beloved older sister. All of this without Kathryn or I trying to get her to vocalize her siblings names or work with her on speech. She is figuring it out and applying what she learned!  Who says God can't do wonders with anything? God allows Elizabeth to daily show us that our earthly expectations and presumptions are so myopic compared to His grace. Elizabeth is fluent in her language with her Creator and that is all she needs--in fact that is all any of us needs!

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 You cannot find peace by avoiding life. --Virginia Woolf

 The point of my little post is really about something a bit broader that I have observed with Elizabeth over these past few months. In the pursuit of our daily lives, as we enjoyed Elizabeth folding into our routines, I noticed that Elizabeth found peace in the most unusual places--at the most unusual times. Elizabeth is not a passive, quiet wallflower of a child. She never has been. She has no problem voicing her opinion in a variety of ways. She is a diva in every sense of the word. She loves nothing more than to "mix it up" with her siblings, yelling, talking, laughing, smiling. She is dynamic and effusive, emotional and stubborn. But, she is also the world's best cuddler. She loves nothing more than to rest on mine or Kathryn's shoulder and take a nap. She thinks that she should be held all the time. (In fact, she will shoot you a VERY unmistakable look if you dare put her down!) She's not the best sleeper at night but power naps through the day like a pro! It's just who she is. We have also found over these last months that she is most at peace (willing to fall asleep without a care in the world) when the events around her are the most frenetic and chaotic. At first, I thought that was just a oddity--an unusual side effect of having been in the NICU at birth and being around all that noise--but, then I began to see that she was telling me something. Something pretty neat.

In April, we celebrated Elizabeth's third birthday! (She's three years old! I still get chills about that. God is good!) Anyway, in a slight deviation from our normal birthday routine, Kathryn and I decided to have a bigger party for Elizabeth and invite some friends of our family who have been so wonderful and so essential to helping us as we figure out our way through this blessed life. These people are dear friends to us and provided us help when they didn't even know they were doing it. They also coincidentally have kids similar ages to ours, so that insured that we would have playmates for Michael and Caroline during the party. In a testament to our lack of understanding of scale, it turned out that we had about sixty family and friends at Elizabeth's party. That was awesome. At one point, I had to step back and be amazed that so many people cared enough about Elizabeth to take time out of their busy Saturday to come and celebrate her life. (Or maybe it was the promise of good cupcakes...who knows?!) Anyway, the party was going strong--it was in no way quiet! There were masses of 4-10 year old kids running about the house and yard in what seemed like herds of icing covered energy. There was pink everywhere. Elizabeth was holding court in the arms of various family members, sporting her best pink smocked dress. She cooed and smiled for everyone, being a very nice honoree! Michael and His Merry Band of Boys were running in and out of the house having sword fights with pool noodles turned light sabers as us fathers tried valiantly but unsuccessfully to settle them down (or at least not hit the ever-present decorative plates off the wall!). Caroline and her Sisterhood of Divas was playing princess dress-up and having a fashion show up and down the stairs as one tried to play DJ with Caroline's assorted Taylor Swift albums. Many cupcakes and other sugar products were consumed and as they disappeared, the volume of all the children increased. It was barely organized chaos, frenetic joy on epic display. We loved it. At the crescendo of all this activity, my dad and I brought out the big event that the older kiddos had been waiting for! Kathryn had found and bought a big pink cupcake pinata somewhere and we hung it from a tree branch. Elizabeth came out in her Aunt Honey's arms and took her place of honor on the patio. Once we sang "Happy Birthday" to Elizabeth, the baseball bat was given to the boys and the insanity began. Kids were everywhere. Everyone got a turn with the bat (Caroline, of all people, was the most direct and powerful of the hitters!) and then Michael gave one huge swing and candy went flying! Screams from the kids. Adults laughing and trying in vain to avoid the chaos. At that moment, I turned to look at Elizabeth, expecting to see her watching all this screeching and kicking with the best of them. But, instead I got to see an even more beautiful picture. Amongst this loud maelstrom of activity, Elizabeth was fast asleep with the sweetest little smile on her face--completely at peace in the midst of a wild (for a three year old) party. That struck me. Elizabeth was most at peace--felt most safe and secure-- when all those around her who she loved were at their most active and vocal. She found peace in the chaos of life. She was content knowing that those she cared about were having fun. Really, really cool.

This little observation was confirmed a couple of months later. It was the end of the summer and we, as a family, had decided to take one of our short notice trips to the beach. As many of you know, we have learned that travelling with Elizabeth is wonderful, but you can't plan too far ahead of time or you'll guarantee a hiccup. So, Kathryn and I had planned a pretty quick little trip to Gulf Shores, AL. It was a wonderful trip. Everyone had he greatest time and we enjoyed letting our kids experience something new and different. Anyway, the first morning we got up and went to the beach. Elizabeth had never been to the ocean or a beach and she was fascinated by the sound of the surf and loved getting to hear Michael and Caroline run around and have fun. We got to our spot and found a couple of chairs and an umbrella. Throwing the heaping piles of sand castle tools, books, sunglasses, shoes, towels, etc. down, Michael and I ran to the ocean to play in the waves. Caroline had a sixteen point plan all mapped out of how to build a sand castle complex and began work on that project. Kathryn got in one of the chairs and set Elizabeth up in the other one. Oh, and another thing: Apparently the Blue Angels--the precision jet flying group--like to practice along the shore of Alabama in the mornings. We had not known this, so imagine our surprise when five fighter jets come barrelling over us at a very low altitude doing barrel rolls, etc. Very cool, but VERY loud! I ran back up to the chairs to get my phone to video it (yeah, I'm that guy!) and found Elizabeth asleep on one of those chairs, not a care in the world, laying there as if to say--I've got my family around. I am with them and happy--I am at peace.

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 You find peace not by rearranging the circumstances of your life, but by realizing who you are at the deepest level.” ― Eckhart Tolle

So, why is this little observation about Elizabeth in any way interesting? Well, I think it is instructive to each of us about how to properly look for peace in our lives. And, everyone is looking for peace. We all desperately search for that perfect Zen garden or bucolic field where we just know peace resides. We clamor and scratch to try to buy enough time to go searching for that place. We just know that this perfect, peaceful Eden is just around the next corner, or after the next million, or following the applause. We constantly push and pull and grab and claw our way in the valiant hope of forcing ourselves to a peaceful place. I really and truly think that we have been misinformed about what peace truly is. We think its a calm state where everyone is relaxed and wise, thinking deep thoughts and basking in camaraderie, enjoying everything and worrying about nothing. But, in fact, Elizabeth has shown me that peace--true lasting solid peace--is deeper than that. Instead of a place to go, a destination to find, it really is a foundation upon which you build your life--the prism through which you see your circumstances. It goes counter to our expectations, it flies in the face of all we think we know.Elizabeth has that peace. She basks in it. So, how can a child with myriad special needs, neurological hurdles, developmental delays and medical setbacks find that peace when so many of us have spent our lives actively searching in vain for it?

The answer is deceptively simple. Elizabeth has peace because she was given it--not because she found it. Her Creator, her Maker, her Protector gave E the "peace that passes understanding". He gave her the ability to sleep amongst the chaos--to show that she is secure because she is loved. Wow. And, honestly, we all have the ability to have that peace, too. We just have to decide to quit searching aimlessly for it--and receive it. This peace won't guarantee you a life without burden. (quite the opposite!) Elizabeth still has her significant issues and mountains to overcome. So will you. What the peace will do, though, is allow you the foundational ability to rest in Him while the world breaks apart the pinata you've built. All while you have a beautiful little smile on your face as you sleep...

We thank each of you for your constant prayers, thoughts and encouragement.  They each mean more to us than you can know.  Have a great October!

Matt, Kathryn, Caroline, Michael and Elizabeth Rowan

Born Without A Mask

'Cause I know my weakness, know my voice,
And I'll believe in grace and choice
And I know perhaps my heart is farce,
But I'll be born without a mask "Babel"

Mumford & Sons

If you ask my immediate family, they will definitely confirm that I have been on a bit of a Mumford & Sons music kick lately.  I guess I'm just a sucker for a driving drum beat and liberal use of the banjo, but as I have listened to their new album, I've been struck by how their lyrics speak to our little family's situation.  I know it'll take some explaining...so, here goes.

First and absolutely foremost, Elizabeth, our warrior diva, is doing well.  She continues to be medically somewhat stable and we haven't had to go to the hospital lately on short notice, so we consider that a huge blessing.  She is growing slowly and gaining weight.  She tops 20 pounds now!  And, we get no small amount of unfiltered joy when we need to buy a bigger sizes of clothing for her. It's the little things, I guess.

One thing we have seen Elizabeth do much more often lately is laugh.  Laugh out loud and cackle with joy.  It brings happy tears to my eyes every time to hear my precious little girl--the same little lady that myriad doctors told us we would never meet, or would only get to hold for an hour or so--laugh uproariously at something Michael said to her, or just let out a giggle when Caroline walks in the room.  Over the last few months, Elizabeth will just wake up laughing.  We can hear her on our baby monitor in our room as she gets up with the sun (she is a notoriously early riser) and begins her little ritual of talking to herself--this is where she tries out new sounds, different volumes for things, and her "presentation".  (As I've said before she doesn't really say "words" as you and I recognize them, but I dare anyone who has ever heard her talking--or God forbid, been the recipient of stern rebuke from her!--tell me that she isn't eloquent in the expression of her thoughts.  There is no subtlety to her at all.  She has found her language and is very fluent in it!)  It is precious to hear her working on her voice and trying out some new sound that she surprises herself with.  She will try the sound softly and then repeat it, gradually getting louder with each try.  She is testing it out for its best effectiveness and needs to see what volume goes with that sound.  It is stunning and beautiful and amazing all at once.  She is teaching herself--teaching herself!--a language.  She is discovering her voice, literally, and experimenting with it during that pre-dawn lesson.  She'll coo and grunt, say "Hi" in different volumes, move into "aboo" with different emphasis on certain parts, move on to "mama" and "didi" then gradually try out her clicking sound, and those new sounds she made up. That wonderful, perfect glorious brain of hers is putting together a little vocal lesson in those mornings.  God is inspiring her to speak and I like to think that in those times she is having a glorious and moving conversation with her Creator.

Before some of you begin to think that that last sentence as just a "God-add-on", a superfluous injecting of God into this scene, let me explain to you how you are so very wrong:  This little lady, this beautifully created special needs child with tons of developmental and neurological "problems" that serve to limit her cognitive and mental ability, should not be doing ANY of this.  According to man and his scientific medical view, this child should be vegetative, non-responsive, catatonic, non-functioning, seizure-wracked, and so completely neurologically undeveloped that she should have no recognition of anything or anyone.  And, yet, here we are listening to her laugh and "talk".  Now, I'm not here to say that our medical professionals were wrong (they are great people--smart and excellent at their chosen fields!), but I liken it to describing in intricate detail the small scrap of wallpaper in a closet in Versailles---you're missing the big, glorious house!  We are not meant to know everything about the brain.  It is an amazing mystery and I am just now beginning to appreciate the wisdom of God in letting us fail to figure it all out.  I have found a large amount of peace in the shrug of a shoulder of a learned doctor when asked why this is happening.  It shows me that God is in control--and that's awesome.

    But, back to the laughing.  Elizabeth will call for her "aboo" while she lays there in the mornings.  She will continue to call for them until they arrive.  And when they do...well, she is so excited to see them, so happy with the start of a new day, so proud of herself for getting them to do this task, she breaks out into laughter.  And, once she starts laughing, Michael and Caroline and Kathryn and I start to laugh, too.  It's contagious.

 It is a beautiful and simple picture of the absolute joy we should all feel in life.  Simple, non-complex, un-cynical life. There is no undercurrent in Elizabeth's laugh of mocking or superiority--its just the pure expression of joy bubbling over. She is not hiding anything, she is not using the laughter to cover up her pain.  She is not wearing a mask to the world.  She is just laughing.   That has taught me that I should do everything I can to get to that place in my life again.  Where I can just laugh.

So, we get back to that little Mumford & Sons lyric-- Elizabeth knows her own voice, she strives daily to work on it and enjoy it. Truly enjoy it. And, we have been blessed to hear her practicing.  She exemplifies to me--her dad--the blissful intersection of grace and choice.  The unyielding and absolute grace of her Creator in making and forming such a wonderful little person and allowing Kathryn and I to be tasked with caring for her.  And the choice we get to make in choosing to be happy and full of laughter.  Elizabeth has no mask.  She was born without one--and through the amazing wisdom of God, she was also born without the mental makeup to desire to have one.  And, that is a great gift!

Another little vignette that may add some color to this picture occurred a couple of weeks ago.  We had all gone over to some friends' house to have a nice party with several families (kids and all). The group was one we are around a lot and the kids are all similar ages so everyone gets along great.  Anyway, as the night progressed, the kids came downstairs from playing upstairs and wanted my friend to put on a movie on the TV in the morning room.  As he was doing this and the adults (and Elizabeth) were gathered in the kitchen, he breezed past a YouTube channel menu.  A couple of the older girls (Caroline included!) asked him to stop and put on some music so they could dance.  I was standing there and we laughed at that idea and so we put some silly music video on.  Actually, the video we played was that obnoxious and silly "Gangnam Style" song. What happened next was one of the funniest things I have ever witnessed.  As soon as the song started to play, twelve kids ranging from 3 to 9, who were all doing their own thing (grabbing sandwiches, getting drinks, playing cars, playing with the dogs) stopped and looked up, jumped up and EVERY ONE OF THEM started doing the dance like the guy on the video!  It was like some toddler flash mob!  And each one of these kids was so excited that they knew this silly dance!  I am quite sure that Caroline and Michael had never heard that song while at our house, but they were doing the dance along with everyone else. (Michael was a bit TOO good at it, too!)  It was a picture of unimpeded joy and fun.   All of the adults were at first gobsmacked that the kids were so organized about it, and then we all broke out into laughter.  And Elizabeth, sitting in her bouncer, started laughing, too, as Micheal came around and moved her arms with the music.  That scene comes to my mind when I talk about removing our masks.  Those kids all were just dancing and laughing and enjoying a silly moment.  It was awesome.  (Now, for many of you good people who are reading this--yes, each of those children are part of families that go to a Baptist church, so I guess technically they were "dancing"--and yes, "Gangnam Style" is a secular song by a South Korean pop singer that most likely does not promote theologically sound principles--but, if you have a problem with all of that, I would respectfully suggest that you get over yourself.  Your mask is on too tight!)  It was a demonstration of living life without a mask.  Those kids weren't making some grand statement on the state of our world or trying to bend someone's ear about the issue of the day, they were just dancing.    

I think it is one of the saddest and heart-rending moments in life to see someone you have known decide to put on their "mask" for the first time.  A child who is carefree and laughing, joyous and filled with hope deciding to cover up these natural human feelings with the mask of cynicism and morose sadness in an effort to "fit in". It would be laughable, really, if we could allow ourselves to laugh.  We all wear masks--we all frankly enjoy changing our masks to fit our circumstance.  We cover up the natural feelings of joy that God gave us in favor of putting on a costume of world-weariness.  I think that one of the millions of lessons that Elizabeth is teaching me is to see how futile it is to wear "masks".  It's useless and fools no one.  God knows the real you--the child who loves to laugh--and isn't fooled by a silly mask.  Those around you who seem to like the mask are really just desperately trying to make sure you don't see theirs.  And, so the stage spins... 

     

Now I'll be bold
As well as strong
And use my head alongside my heart
So tame my flesh
And fix my eyes
A tethered mind freed from the lies
"I Will Wait"

Mumford & Sons

And, so I will try to take a lesson from the diva and remove my mask and embrace the joy.  I know I'll fail a lot and may resort back to the deceptive comfort of covering up in that mask, but it is definitely worth a try.  I think that we also can take something from that last line of this other lyric I posted.  "A tethered mind free from the lies"...I kind of love that picture.  It evokes to me a picture of my mind tethered to God and His Son, Jesus--connected for safety's sake to something solid and strong.  But, my mind is freed from the lies of the world, the deception of the need to wear masks and cover up who God made you to be.  And, when you truly free your mind from those lies, you can then see the absolute and total need to tether up to your Creator.  It is what you were truly created to do.  And, Elizabeth--sweet, talkative, giggly warrior Elizabeth--was able to skip all these silly steps and go straight to the end.  She was born without a mask and that is unbelievably cool. 

So, get out and enjoy this life.  And, if you come across a toddler flash mob dancing to South Korean pop, please be kind enough to tell Michael and Caroline to come home when they're done!

Didi and the Hair Farmer

"Call unto Me and I will answer you and show you great and mighty things."

Jeremiah 33:3

Friends,

It has been a very medically "stable" time over the last couple of months for Elizabeth.  That is such a blessing, considering the previous two and half years have been pretty dramatic and busy as we learned how to treat and understand this wonderful and unique creation that God has given us.  It takes a slower, quieter time to really appreciate the breakneck speed we had been going with Elizabeth.  We have been allowed the opportunity to let go of the stressful grip of just "hanging on" and really begin to appreciate the wonderful journey of our lives together.  Now, before you all begin to think that we've been churning butter and whittling wooden figurines as we whistle away the day, let me paint a brief picture of Rowan "slowing down and appreciating the journey":  Elizabeth gets physical therapy (with the amazing Bo!) three times a week, she has been fighting a chronic set of double ear infections over the winter that have prevented her from sleeping any extended period of time and also makes her not want to swallow food (or anything for that matter!), she got ear tubes to fix the previous problem, lost her voice twice because of congestion and coughing, manifested some frankly wierd seizures over a week, and has been cutting her molars all at once.  But, other than those little things, she has been awesome!  Those listed things are truly so minor in the greater scheme of Elizabeth's stuff that we don't consider it much of anything. 

More important that any of that, this has been a beautiful time of Elizabeth feeling "good" and letting her amazing personality shine.  We have just loved (and said many prayers of thanskgiving for) these months where the "Diva" has been in full residence and her personality has been on display for all to see! No one can ever accuse her of being lacking in the attitude department.  Over the last few months, Elizabeth has started to really vocalize herself. Her sign language stuff is still VERY present but she has found her voice, and has enjoyed figuring that out!   She is becoming more creative with her vocalizations and has been putting on quite a show for anyone to hear with her new sounds and "words". 

Now, this last part is a bit surprising as we have heard from tons of doctors and other experts that Elizabeth's brain is not built to really be able to formulate speech.  It was said that it was highly unlikely that she would ever talk or even communicate via vocal sound.  However, as is becoming our norm, Elizabeth and Her Creator obviously had a very different plan.  Daily, she "says" things to us that we all understand.  When someone enters the room where she is, and has the audacity to not immediately say hello to her, she decides to become the bigger person and clearly says "Hi" to them.  (The Diva in her is always present!) She also uses "hi" as a call to Michael and Caroline if they are running around the house and are not coming close enough to her. She will not be left out of their play!  It is unmistakable and glorious.  She also has made up a word for Caroline and Michael.  They are "aboo".  No idea why or what that means, but Elizabeth is very clear when she wants to see her "aboo".  She will call in a loud and unmistakable voice "aboo!" when she hears them upstairs and needs to see them.  What is even more awesome about this is that Michael and Caroline are very aware that this is their collective "name" and they respond immediately!  That is impressive!  Kathryn and I cannot ever get such quick and respectful attention to our requests!  Often, as the kids are playing and laughing and talking and squabbling around Elizabeth, she will chime in with a sound or noise that is equal in timbre and volume as the goings-on around her.  She is clearly and unmistakably participating in the conversation (or fight) and will not be silenced!  She coos and gurgles like any baby, but sometimes when she gets riled up about something, she will let you have it and will obviously be saying something (sometimes even long stretches of something) in her language like any other participant in a conversation.  We love it.  Recently, she has even taken to having conversations with whoever is holding her at any given time.  As her grandparents (and her beloved Miss Margaret) can readily attest, Elizabeth is at no loss for conversation if she has something to say.  And, while the "words" may not be easily understood, her tone is unmistakable.  Take that, doom and gloom-ers!  There's much more to Elizabeth's brain and intelligence than what the tests show.  God, her loving and ever-present cheerleader, is allowing Elizabeth to show in unadulterated clarity that there are simply untold layers of surprises that she will continue to show us.  It shows us that she will not be limited by a diagnosis, and that her "words" can speak volumes about the grace and hope that God provides to everyone.

We have seen the effect of Elizabeth's testimony in some pretty neat ways over the last few months:

1.    Caroline is Elizabeth's "second mother" and takes much pride in taking care of Elizabeth.   She constantly holds her hand and talks with her, helps Kathryn or I feed her, holds her and generally loves being a big sister to her "Lee Lee".   Caroline is remarkably strong and has really embraced Elizabeth's situation with a maturity and clarity that we frankly wish others three times her age would employ.  She does not back away from the hard realities of Elizabeth's situation and sees Elizabeth for who she is, not what she wishes Elizabeth could be.  I admire Caroline more than she knows and we can learn a lot from that nine-year-old on how to handle tough medical realities.  She does it with grace and a smile.  She loves to play teacher and store, and her best student/customer is always Elizabeth.  When E gets to go up to Carolline's room to play, she is so excited she can barely contain herself.  She kicks and smiles and lets out little screams of excitement.  (It may help that Caroline always seems to give her an "A++" on all her work and lets her hold the pointer!) It warms my heart to see the sisters playing together.  It is that slice of normalcy in a very abnormal situation that makes me love how God has provided for us in this.  (On a side note, Kathryn and I prayed three years ago, while E was still in the womb, that she would be able to have a wonderful, deep, meaningful relationship with Caroline and Michael, and to see this prayer being lovingly and simply answered in such a unique way only solidifies my amazement in the wonder of God's wisdom!)

Anyway, one day, Caroline came up to us and said that she had been thinking hard about something and she really wanted to grow her hair out and get it cut for Locks of Love, which makes wigs out of donated hair for kids with cancer.  I felt my heart getting caught in my throat a bit, as I looked at Caroline--the look of intense determination on her face--and saw that she was absolutely adamant about this.  She then said that it wasn't fair for kids to have to lose thier hair because of cancer.  She wanted to give them her hair to let them have a nice wig. Plus, she said, she wanted to do something for kids who needed help.  "I would want other kids to do that for Elizabeth if she needed it."   Kathryn and I were so proud of her--coming up with this on her own and finding a way to give back to other kids.  This sprit of helping--this charitable drive--was another way that Elizabeth's story--and her profound effect on each of us--has helped form our sweet Caroline into the caring, young lady she is.  Caroline acted like it was the most logical thing in the world.  And, once that little lady makes up her mind, she simply does it.  So, about three weeks ago, Caroline went in and got 12 inches of hair cut off and she never flinched about it.  She was excited and told me afterward, "That made me feel good.  I'm going to start growing it back out again to do this next year!"  So, it looks like we are now hair farmers for Locks of Love!

Here are the before and after pictures:

2.  The next example comes from me.  As I said, E's ear infections were causing her to not sleep.  This meant that Kathryn or I would have to hold her upright and sleeping on our chests to let her get any rest.  (Every parent of a kiddo with ear infections knows this position very well!)   In my case, I can't sleep when I'm holding her like this, so I stay up and watch the very thin offerings on TV between 3 and 5 a.m.  After several nights of this, I began to have a pretty huge self- pity party.  I was so tired and sleepy.  Why couldn't E just have it easy for a while?  Why did she have to hurt so bad?  It just wasn't fair. I just need to sleep...blah, blah, blah.  I was a big ball of fun, let me tell you!  As I looked down at her, throwing mental confetti at my "Woe is Me" Fiesta, I was struck by something... You know, God gave Elizabeth a simply wonderful gift.  He gave her a lack of self-pity.  If anyone in this little scenario should be feeling sorry for herself and wailing about the obstacles set in front of her, it would be my sweet E.  Her brain is underdeveloped.  She is severely developmentally delayed.  She can't (and most likely won't) ever be able to do many of things her beloved siblings can do.  She needs constant care.  She has medical conditions that teams of highly specialized doctors know absolutely nothing about.  She is tested, poked, prodded, and studied in withering detail.  She fully and completely relies on all of her caretakers for every aspect of her day.  And, on top of all that, her ears hurt!   If anyone could be and deserved to be throwing a Pity Party for the Ages it would be her.  No one would blame her.  And, yet, God created our Divine Miss E in the complete opposite mold.  She has absolutely no concept of feeling sorry for herself. That simply is not in her broadening vocabulary.  God made her perfectly, and He made sure she wouldn't ever go to that "well of worry".  That is unbelievably cool.

Elizabeth is the happiest child I know.  She loves everything about her day.  Even physical therapy (which can be very hard) is something she enters into with a grin and squeal of delight.  Now, she will let you know if she is upset or finished with a particular "experience" in no uncertain terms--(she is still a Diva, after all!) but her personality is simply not wired for worry or self-pity.  She takes each circumstance as a fun experience.  She greets each situation with a smile.  She is excited about every single moment.  Now, some would say that her attitude is due to her underdeveloped brain and systems.  I say that those people are sad and close-minded.  It is because her Creator decided to give her a wonderful gift.  The gift of blissful, unfiltered joy.  We could all learn something from that.  We should all strive to approach each moment as Elizabeth does.  It is not silly to shrug off worry.  You aren't being naive to push away self-pity.  In fact, it is my opinion, that such actions show amazing wisdom and prescient intelligence.  Because, really, what is worry anyway?  Just a waste of effort when you could be enjoying the moment.  (And, yes, friends, I am preaching most passionately to myself on this!)

So, as I held E and thought all those thoughts, I felt that God was once again pushing me to learn from my youngest daughter.  It is my deepest hope that I can get to a point in my life where I sleep with a small grin on my face and not a worried frown.  Just then, I saw Elizabeth wake up a bit.  She squirmed and grunted, obviously needing to reposition herself.  Plus, Daddy was being silly again and disturbing her nap.  She flashed me a glance that unequivocably said "Come on, Dad!  Get over it.  I need my sleep here!" and then apparently thought better of that and gave me her smile.   I smiled back, and then she said, "Didi".  At that moment, I knew exactly what this new word meant--Daddy.

With that one small word, all the balloons at my party popped, all the sad streamers were cleaned out, and security arrived to kick me out---this self-pity party was very much over!  This precious little girl was moving forward, gleaning everything she could from the upcoming moment.  Refusing to rest on what had happened, but looking with clear happy eyes at what was to come.  She was using her beautiful brain to come up with a name for this silly guy that always holds her and thinks too much...Didi.   And with that achieved, she then moved on and now calls her wonderful, beloved and amazing Kathryn "mama", too. 

It's funny how those two little milestones that every parent longs to hear--a child calling out it's parents' names--are so much more meaningful to Kathryn and I because we never expected to hear it from E.  We didn't ever think it was within the realm of expectation for Elizabeth to do that.  Which is precisely why God allowed it to happen.  He knew that we needed another little glimpse at the truly miraculous way He formed Elizabeth to remind us that our wells of worry were silly, meaningless and powerless.  That He is in control here and that all He longs to hear from any of us when we are facing tough times is-- "Didi". 

=========================================================

So, we are doing very well here at the beginning of 2013.  Elizabeth continues to progress with a bold and wonderful zest for life.  We tackle each day as it comes and praise God for the opportunity to be able to share-- in some small way-- the amazing story of a girl who beats the odds and her Heavenly ""Didi" who shows His wisdom and grace in every new event we witness.

Thanks for all your thoughts, prayers and kind words.  We are blessed beyond words!

Matt, Kathryn, Caroline, Michael and Elizabeth Rowan

Let Go and Hold On!

Friends,

As Autumn seems to be limping in (at least down here in Texas!), our family has been enjoying the nice weather and opportunities to be outside and playing.  None of our crew has enjoyed this time of year more than Miss Elizabeth.  She loves being outdoors, soaking up the sun, listening to the wind in the leaves, and being around her brother and sister as they play (usually with two-seven of their greatest friends in tow).  She milks the "diva" reputation pretty well during these times, granting smiles and coos of approval when the kiddos come over and talk with her or even give her a kiss! (As a dad, I'm watching some of these young men closely...Elizabeth can be quite a flirt!)   But, then, when she's done, and the frenetic chaos of the back yard is in full swing, she will go to sleep--resting in the calming sounds of her siblings playing.  I love that scene.  To a dad, it shows me that Elizabeth is most at peace when she hears others playing and she is calmed by the sound of the simple joys of playing outside.  She seems to let go of her daily worries in that time and just resolve to hold on while the activity carries her away.  We have seen this in Elizabeth since her birth.  She is always the most calm and willing to doze off when there is a cacophony of sound erupting about her.  It seems odd, but she feels most safe and loved when she is around the chaos of daily life.   She sleeps like a ninja when we have tons of people over to watch a game or have dinner; she nestles down in the arms of whomever is in her good graces that day to sleep; a smile on her face as she knows that everyone else is buzzing around.  She loves the activity.  Now, conversely, when it's quiet and calm around our house (mostly after the two older kiddos have gone to bed/collapsed) Elizabeth is wide awake and eager to fill that void with activity.  That can put a bit of a burden on her parents (who have heard rumors that sleep does allegedly occur on a semi-regular (even daily!) basis) but we enjoy those times as well.  It is our opportunity to be with Elizabeth and talk with her without the activity of the day.  Elizabeth doesn't seem to relish it as much as we do--she's searching for her partners in chaos. 

I think the lesson here is pretty cool.  Elizabeth seems to do the opposite of what we all try to do every day.  She sleeps while the world is buzzing about her.  She let's go--and then holds on!  I think God wants us to see this as a way for each of us to try to look at our lives.  There are a bunch of lessons (too many to count) that God has shown us through the unique prism of Elizabeth.  But, in each one I think the theme is that we should let go of our own silly stranglehold we have on our lives--and then hold on to the glorious ride that is God's will for our lives.  Release the circumstances a bit.  In other words, relinquish control to another, wiser source.  You have to let go of your grip on those things you are trying so desperately to control in order to have hands free and available to hold on to handles of the ride that you were meant to be on.  Let go--and hold on.  It sounds so silly--but it is really kinda deep.  Let me give you a more concrete example of how we've seen this play out in our lives with Elizabeth, and maybe it'll make more sense:

Back when Elizabeth was about a year old, our pediatrician was noting that Elizabeth's growth patterns were so slow and non-normal and her weight gain had been sporadic.  As a result, he referred us to see a pediatric endocrinologist here in town.  The hope was that this doctor could give us some options about how to stimulate Elizabeth's growth or see if her thyroid was producing the right chemicals to allow for her growth.  Looking back, we realize that this was just another aspect of Elizabeth that was going to confound diagnosis, but at the time, it was something we wanted to explore. The endocrinologist was just super.  He was kind, very knowledgeable and took a great interest in helping us try to find a solution to help Elizabeth grow and gain weight.  We tested and tested and tested.  But, there wasn't any solution readily apparent.  Her thyroid was working perfectly.  So, we began to explore other options.  After much discussion and thought, we decided to begin Human Growth Hormone therapy.  The thought was two-fold on this: (1) the HGH would possibly "jump start" or encourage growth to get Elizabeth into a more normal pattern--and also encourage weight gain; (2) it would possibly allow for some "settling down" of the epileptic seizures in her brain.  Apparently, it had been noted in some clinical studies that HGH had served to cause the receptors in the brain to modify a bit to reduce seizure activity.  While we knew the seizure control was not a likely outcome, it certainly was not a negative side effect.  So, after much discussion and the acknowledgement of her unlikely eligibility to play professional baseball or compete in competitive cycling, we decided to put Elizabeth on HGH.  The HGH was to be administered to Elizabeth by Kathryn and I through daily injections.  Now, let me pause just a second while you all think about that.  Kathryn and I had to give Elizabeth a shot every day.  Needles don't necessarily bother me, but the thought of having to give our sweet E a shot every day was not on my list of things I wanted to do.  But, we knuckled down and learned how to administer the injections.  And, we gave E her shot every evening for a year and a half.  Once we got in the rhythm of it, it really wasn't that bad.  Elizabeth got used to it as well..  She was a warrior and didn't even flinch after the first couple of weeks.  It became a part of our daily routine. 

Anyway, as you all know by reading this blog, the shots were amazingly effective and Elizabeth is now six and half feet tall...just kidding!  As the year and half went on, we noticed some growth in Elizabeth, but it remained glacial.  We agreed with the doctor that it wasn't hurting her in any way, so it was good to keep it up.  Maybe this HGH was helping her grow even the small amount she was.  Plus, it might be helping her seizures. So, we continued to inject.  Every. Night.

The medicine was delivered by a company in the form of pens (like epi-pens) every month.  And, in the beginning, our insurance covered it.  But, soon, the insurance company awoke from its fever dream of logic and helpfulness and realized that they were authorizing an HGH injection for a patient who was determined to medically need such treatment, but who was unfortunately without a global diagnosis.  Without a global diagnosis, the insurance company was unable to plug in said diagnosis into their handy-dandy computer and have all the necessary medicines and treatments outlined that would serve to cure the hypothetical patient with this diagnosis.  The computer's hard drive veritably exploded with the horrible possibility that it may have to resort to actual human contact and except out the little girl who was unable to have a diagnosis due to the awesomeness of her creation.  So, after eight months, the insurance company denied further authorization of HGH injections.  Our endocrinologist went to bat for us and got an additional ten months out of them.  He showed the insurance company that this HGH was medically necessary--novel concept!--and they relented.  I also spent a good deal of time on the phone trying to explain to them that Elizabeth doesn't have a diagnosis because medicine hasn't seen someone like her yet.  While sympathetic to me, they also made sure I understood that they couldn't plug it into the Hippocrates 2.0 Uber-Dispenser to have an easy answer.  After assuring them that I now felt highly confident in the future of medical practice now that Hippocrates 2.0 was on the case, I hung up knowing that this battle wasn't won--just delayed.

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

But, each of those avenues of possible resolution soon closed.  Each one was denied.  Absolutely every way of keeping Elizabeth on HGH was blocked.  And, so, in August, we discontinued the HGH injections.  Elizabeth was thrilled!  She didn't have to be poked every night!  We were slightly less enthused.  We felt like we had failed Elizabeth.  We hadn't been able to fight hard enough or well enough to get what she needed.  We refused to let go.  We wanted to drive our circumstances---hold on to the control.

And, after being forced to let go, we then got the opportunity to hold on to God's ride with this.  Grudgingly, we grabbed on and took off!   Since August, Elizabeth has thrived!  She has grown in length so that she is now busting out of her clothes.  She is still small for her age, but she is growing.  Her weight is now at 17 pounds and holding!  She is eating very well and is healthy.  Her cheeks are chubby and we even see the hint of rolls on her legs!  She is currently cutting her molars (her MOLARS!)and has four very distinct teeth in her mouth.  In all, she is growing.  Not fast, but steadily. 

So, once again we were shown through the seemingly silly example of HGH shots that we need to be willing to let go of our stranglehold of control and hold on as God takes us on His journey.  I firmly believe that we absolutely should have fought as hard as we did for the medicine.  (And, don't read this as some admission that Kathryn and I are anything less than warriors for Elizabeth with the insurance company!) But, the ultimate lesson is that when you let go of your silly perceived defeats, when you allow God to run His show, the outcome is so much better--so much truer--than you could create. 

So, to each of you, if you are clutching something that is holding you down;  if you find yourself spinning in the cacophony of daily life, unable to sleep in the noise you hear-- grasping for that handhold of control--I might suggest that you let go of that wish and hold on to God's hand.  He has a pretty amazing ride planned--and, if you're very, very lucky, you just might get a passenger on that ride who has a smile of anticipation like this:

We hope everyone has a wonderful fall and a great Thanksgiving!

Matt, Kathryn, Caroline, Michael and Elizabeth

Open Hands and Virtual Xylophones

Friends,

About a year ago, Elizabeth entered into a pretty hard regimen of physical therapy with a lovely lady named Bo.   Elizabeth had been doing physical therapy before this, but Bo was different.  She had a new outlook on Elizabeth.  She came in and immediately began to challenge Elizabeth in many ways.  She knew all the diagnoses and limitations that Elizabeth's conditions presented.  She was very experienced at working with many different kinds of kids with physcial limitations and saw Elizabeth as a challenge--mainly because so little was known about her diagnosis and  no one knew what effects this hole of knowledge would have on how Elizabeth would react to different methods.  And, on that day last year, Bo was presented with quite a picture.   

  You see, Elizabeth's beautiful brain has been built by God in a very unique way.  And that unique structure causes certain physical manifestations.  Let me explain a bit: 

First off, Elizabeth does not have a corpus callosum, which is the large bundle of nerves that connect the left and right hemispheres of the brain.  The corpus callosum is basically a neural "bridge" that allows the two sides of the brain to communicate with each other.  Elizabeth does not have this bridge to allow her right side and left side of her brain to communicate.  This is problematic physcially because, in E's case, her left hand literally doesn't know what her right hand is doing.  So, basic things like walking, standing, and even clapping her hands is almost impossible as it requires coordination between the two sides to accomplish.  Plus, if you were to reach with your left hand and try to cross your chest to your right side of your body, this would require a "cross-body" movement and would require communication between the two sides of the hemispheres of the brain.  Also, it can affect how her eyes can track something moving from left to right.  It is akin to basically having two independent brains controlling one side of the body each and trying to get things coordinated.   It also causes severe seizures and developmental problems.  So, as a result of the wonderful and perfect way God made Elizabeth, the thought of coordinated steps with both feet is nearly impossible.  There have been  some studies that say that some neural pathways can be "built" between the hemispheres but it would never ever approach the mass and complexity of the corpus callosum. And, such small neural pathways take years (if not decades) to build.  So, we have that going for us....

Secondly, E has some form of lissencephaly.  This is "smooth brain" or the failure of the surface to form gyrae and sucli.   It is not as pronounced as it could be (see "Wrinkles...In Time" entry)  and there is a huge miarcle involved in this, but it is without any doubt that many of her gyrae and sulci (wrinkles) haven't fully formed.  These wrinkles are essential to make a brain have enough mass to allow for cognition, etc.  Minor forms of lissencephaly (but, really, are there ANY real minor forms of lissenchephaly?!!) can be manifested physically with the child being lethargic, very low muscle tone, and the child's brain having an inability to perform basic cognitive functions.  Severe cases are shown to be vegetative states.  Many sufferers of this are known as "floppy babies".  They simply have no or very low muscle tone.  So, that was another ingredient in E's neurological recipe...

Next, Elizabeth has microcephaly which indicates that her brain size is smaller than usual.  Smaller size means less mass to use cognitive thought.  That is fun...

Next, Elizabeth has something called cerebellar hypoplasia, which means the cerebellum is markedly smaller than it should be.  Many indications resultant from this are that the child tends to rest in a fetal position or "balls up".  They lay in an almost ball shape and cannot be straghtened out without significant effort.  Also, their hands will remain in tight fists constantly and they won't be able to open thier hands or flex their fingers. 

And then we have the added bonus of myriad other neurological issues that have either never been seen or studied in any significant amount, as well as metabolic issues that effect her growth and slow that down significantly, as well as this amporphous mystery stuff that indicates that her growth patterns are so slow as to be "glacial".

And, truly, my friends, that is only the beginning...but, this is the picture Bo was shown when she first met our sweet E.  It can be overwhelming.  It can be daunting to anyone.  I know my beautiful and awesome E and what she is capable of, and that list intimidates me.  It seems to present a child with little or no physical options for ambulation or movement.  And, at the time Bo first met Elizabeth, our darling diva was showing some signs of her conditions.  Her hands were always in fists.  Always.  She never opened them much.  We would try to force them open in some way, but met much resistance.  She was most comfortable in a bit of a ball, her knees up towards her chest.   She didn't like to lay down on her back straight and always seemed to be doing "crunches" to go back in to a ball-like state.  She was not eager to put weight on her feet and it was pretty hard to even get her to straighten out her legs.  Bo saw all of this and was tasked with giving Elizabeth a physical therapy regimen. 

And, then Bo started doing what Bo does best.  She set some pretty huge goals for Elizabeth (after one year, she wanted E to have her hands open and be comfortable straightening out her legs) and began to work.  She started to move Elizabeth's limbs and really push her to her limit.  And then Bo finally met the Diva we had told her about.  Elizabeth let Bo know very quickly that she did not like this new therapy one little bit.  She screamed and cried.  But, Bo was undaunted.  Along with Kathryn, Bo lovingly encouraged E at every session to do a little bit more.  Much of that encouragement was given over screams of protest and a stuck out lip, but it was given just the same.  Then, E decided that screaming was obviously not working, so she began to try another tack.  She pretended to go to sleep.  Once Bo would arrive for therapy, Little Miss Bright Eyes would suddenly become sleepy and would "go to sleep".  At first, Bo and Kathryn would just stop and say that she needed to rest (which was exactly what that little scamp wanted them to do!), but then Kathryn realized she was faking it.  E would open one eye to see if they were buying it and got caught!  So, Bo would continue to do some form of therapy on E while she pretended to sleep.  I must admit it looked pretty odd to see Bo doing therapy on a seemingly sleeping child, but we all knew it was just E's attempt to avoid therapy.  After E began to realize her little sleeping farce wasn't working, she tried something else.  She would furiously use her "sign" for hungry to Kathryn or Bo.  She knew that it seemed like her mommy would always stop everything to feed her, so she must have thought that Mommy would stop this crazy lady from making her move if she told her she was hungry.  This, too, didn't work very much.  But, it was funny to watch E desperately signing "hungry" with as much force as she could to try to get someone--anyone--to feed her to stop this therapy. 

Now, please don't read this to think we were doing anything to hurt our sweet E.  In fact, Bo was helping her greatly, but E was and is such a big ol' Diva that she was just trying to avoid the work.  She's like anyone else who has to face some pretty tough physical therapy...and on that point, let me wander off the trail for just a second and acknowledge how completely awesome those displays of rebellion were for us to see.  This child was supposed to be  lethargic, vegatative and not "present".  Not able to identify people or circumstances.  And, yet, here she is formulating plans--plans!--to avoid therapy.  Plans that she is able to figure out would possibly cause Bo or Kathryn to stop the therapy.  Its ingenious, clever, manipulative, and just plain awesome!  My little fighter, my blonde haired diva, is plotting a revolution.  And we wouldn't have it any other way!

So, despite hunger strikes, random fits of narcolepsy, and vocal protests, Bo soldiered on--aware of the prognosis of E's conditions, but not relying upon them.  Doing whatever she could think of to help E realize her ability.  And, then...one day a few months ago...Bo got her iPhone and looked up an app that had a virtual xylophone with bright colors and put it in front of E.  She would take E's hand and move her hand along the keys.  E was mesmerized.  She let out one of her huge smiles and you could just see her connecting the dots that she was making the keys make the noise.  She was playing a xylophone.  Her hands were making it play.  And, the sleepy, hungry diva suddenly became awake with the possibilities.  She loves that silly app and will play it as much as Bo will let her.  So, we parents immediately downloaded the app on our phones, iPad and anything else that would take it!  (It's called "Music Sparkles" in case anyone is even remotely interested!)  And, now E will play certain notes and will return to that note over and over again.  She is learning the sounds and recognizing that they are associated with certain keys.  This is huge!  Just huge!  She is thinking...processing...and coordinating herself to play these notes.  It's no symphony, but it sure sounds sweet to me.  It is the song of God's grace and it is beautiful.

And Bo continued.  She worked and worked, and frankly, my Elizabeth worked and worked, too.  Kathryn and I were doing our homework with continuing to move her muscles and joints, we were letting Elizabeth discover the joy of movement, and seeing amazing results.    So, we fast forward through a hard year of work and Bo told Kathryn that, when she had first begun to be Elizabeth's therapist, she hoped beyond hope to have Elizabeth open her hands up a bit after a year.  That was the unattainable goal.  Well, needless to say, she now leaves her hands open most of the time--no more default fists.  Oh, and did I mention that Elizabeth decided to be the teacher's pet and go above and beyond what anyone would expect?  Here it is:

Yes, the walking is shaky and tenative, but she is using both of her feet to coordinate steps.  She is having to be supported, but she is moving her legs and feet.  And is moving them in a left/right pattern...coordinating both sides to take supported steps.  And, that ladies and gentlemen, was something she was thought to never be able to do.  Except sweet, strong, determined Elizabeth knew better.  God knew better.  We always say that He made her perfectly.  She may not be able to walk fully, but if that video doesn't exemplify how man's limits are merely God's opportunities to show His divine Plan, then you need to re-examine your understanding a bit. 

So, what is the point of this?  Honestly, I'm not sure.  I know that all of this shows that God is much bigger than a diagnosis, that He lovingly embraces every person and can use them and their challenges to show how He is present to defy odds.  It shows that we are constanlty surrounded by miraculous stuff, we just need to adjust our line of sight a bit.  Oh, and it shows that Bo knows therapy!

We have many challenges to face as we progress through life with our sweet E.  Things will come slowly for her--if they come at all-- but I am comforted to know that God has us in His open hand and all we have to do is trust that He will show us how to coordinate our lives to move forward. 

This last picture is just one I love.  No real continuity with the above dissertation on therapy, but it's fun.   E found a magic wand toy while we were on a trip that she finds just fascinating and she waves it around all the time.  The wand makes a "magic"-y sound when you press a little button and a blue light appears on the end.   E thinks it's about the funniest thing ever and she enjoys that she can push the button to make the sound. 

So, watch out everybody!  Your Fairy Godmother is armed and ready to do some damage!

We hope finds everyone doing well and having a fun-filled Fall.

Matt, Kathryn, Caroline, Michael and Elizabeth!

Kneeling on the Battlefield

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

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

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

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

Friends,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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