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". 

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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