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.
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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
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