I Wanna See You Be BRAVE!

I cannot count how many times, over the past few years, I've had someone comment verbally or post virtually that I am brave, or that Bryant and I, as parents, are brave, or that Clark is a brave little girl,  or that we, as a family...you get the point. And here's the thing; for a split second, I want to own it. Brave is BIG! Brave is one of those major flattery words. When you're a kid, you have adults asking you to be brave in many cases; immunizations, water skiing for the first time, singing or speaking in front of others, etc. Adults seem like they have the whole "bravery" thing figured out.  As you get older, you learn so much more about life and pain and evils of the world, and bravery takes on a whole new meaning.
But here's the thing: I am not brave and neither is my beautiful, tenacious, fighter of a little girl. (I have learned not to speak for the other three folks in my house- trust that they speak PLENTY for themselves!) Maybe it's semantics that I'm playing with here, but what I strive to be is faithful. The scary part is that the little one is faithful, too! However, her faith is in Bryant and I. The innate, blind faith that every child has in their parents, unless or until they lose it. Until the parental humanness is detected. Until the halos and capes disappear from the periphery. Until they slowly learn that no matter how great the love, it can never be as great as the greatest.
I will admit that I did try the bravery thing for a while. It seemed like the thing that you're supposed to do or be, based on all that we are told while growing. But bravery is no match for faith, and when you are being held in faith by one that is most precious, you best be holding your faith in the One that is ever faithful. When the breakdown commences, you wonder why you lack strength or have the inability to carry the load. You muster just enough strength to stand back up again, only to be back on your knees a few days, or minutes, later. And in your pleading for strength, you get something else instead:
The Promise of Peace

“Peace is what I leave with you; it is my own peace that I give you. I do not give it as the world does. Do not be worried and upset; do not be afraid.” John 14:27

“But now, this is what the Lord says…Fear not, for I have redeemed you; I have summoned you by name; you are mine.” Isaiah 43:1

“The Lord is my light and my salvation—whom shall I fear?  The Lord is the stronghold of my life—of whom shall I be afraid?” Psalm 27:1

“I prayed to the Lord, and he answered me.  He freed me from all my fears.” Psalm 34:4

Over and over he promises the peace that comes with the same child-like faith that Clark has in us. Just in case we didn't hear it the first (or 17th) time. And we're so busy being brave and strong and making decisions that we forget who the Savior is. We start to think it's us, or the surgeon, or the knowledge.

If anyone sees anything in me, or her, or us, I hope it's a neon arrow above our heads that points upward. Mind you, our lot is so small in comparison to so, so, so many, and don't think, for even a second, that we don't know it. But in the hardest moments, he has always made good on his promises. Moments of peace in a physical manifestation that flows through my mind and body. Moments of grace too remarkable to be anything less than God-winks and surpass all understanding. Moments of clarity where the rocky path immediately becomes smooth and well-lit. Moments where God's presence, with me, FOR ME, is so clear that the gravity of it almost takes my breath away.

Does this mean that I don't appreciate the validation or encouragement that comes with every kindness from others? Absolutely not. Will I ever refute? Not likely. But I do hope I will make haste to move past that moment of flattery to find the words to give credit where credit is due:

We're leaving Los Angeles....

                                                         

Well, it's the night before we depart. We are purging and washing and packing and strategizing about suitcase efficiency! I have officially been terrible about keeping the blog updated, but not because I've had nothing to share. Mostly, it's because we have been DOING like crazy and I have not had the opportunity to sit, unless it was behind the wheel of the car, or in the passenger side playing "navigator". I can honestly say this has been an adventure in every sense of the word and one that I don't think we (with the exception of Clark) will ever forget. As we sat down at the table for dinner tonight, Brynn said," This has been so much fun, I can hardly remember the bad parts". I hope this remains true when we return. We have had a great time, but don't think for one minute that any of us is not completely ready to be HOME! While here, we've been somewhere on a continuum of "man, I could get used to this weather" on one end and "there is NO WAY I could live here" on the other. Many times, we have seen landscapes that we just couldn't even make our mind comprehend as "real" and have looked around for cameras at times when we felt we MUST be in a movie, as it couldn't be "real life".  On the subject of home, let me recount some of the things that we've missed the most:

1. Knowing the speed limit and actually being able to drive at that speed, if desired: There have been times that I have gone over an hour and have had no clue what the speed limit was. The signage is just crazy and different here. I guess ultimately there is no need to waste the money on signage, as either one of two things are true here: you are either a) in crazy traffic going 10 MPH if you're lucky or b) on the freeway going around 80 so you don't get run over. NOTHING in between.

2. Sweet Tea and biscuits: Now, to be fair, McDonald's does serve Sweet Tea and Carl's Jr. (Hardee's twin brother) has biscuits (that we didn't partake in), but as a general rule, these are not readily available. While we've been here, I kept tea made, and  the girls conned a couple of former NC residents to make tea while visiting (they are shameless!), so we aren't having the shakes or anything, but STILL! (Bojangles, we're coming home to you!)

3. Knowing that you could communicate with almost everyone around you: As you can imagine, we have come into contact with many people speaking MANY different languages; mostly Spanish, but lots of others, too. Brynn has gotten us through a few situations that would have other-wise been much more difficult. Having said that, this has been a great thing. I am grateful for the girls to experience this beautiful thing that makes our country OURS. It has also shown them that learning a second (or 3rd or 4th) language not only has value, but real application.

4. Our people: We have so missed our family and friends. The time difference has made it even harder because, in the evenings, when we get to a point where we can actually make calls, it is way too late to call. We know y'all love us, but not THAT much. ;) We also miss our Woody dog, who is also our people. Luckily we found a stuffed replica (minus the bad breath) that has traveled with us and slept with Brynn since Sunday. (Woody, we're coming home to you! Hang in there!)

5. Greeness and Flatness: It is DRY and brown. I am glad there are at least things that can be brown, as opposed to concrete everywhere, but I have never seen anything like it. They are not kidding when they say there's no water. In Bakersfield, we drove over a bridge, which should have carried us over a river. Instead, we went over DIRT. Lots of dry, dusty powder with not a drop of water in sight. Jacksonville folks could picture driving over the bridge on 17 and seeing only vast desert where water used to be. It's really a sad situation. We also feel like we've seen more mountains than we ever anticipated. When you're on the beach, the mountains are behind you. When you're on the freeway, you're in the mountains. The only time you're not in the mountains is when you're in the valley. And that's your geography lesson for today! 

What we haven't missed (or will miss from here):

1. HUMIDITY: Now, don't get me wrong. WE have felt HEAT. I mean, crazy, "Did God leave the oven door open after he took the biscuits out and forget?" kind of heat, but there's no sweating! 106 degrees outside and still limited perspiration! And when you go under a tree or other shade, it drops a good 10 degrees. Those have been the moments I've swung to the left of that continuum. We've also been COLD. Not often, but we've had to deploy jackets and blankets a couple times, even Mr. Hotty (take that any way you'd like). ;)

2. In N Out: We made our 2nd trip, as a farewell, last night. We've already developed some strategies to overcome this issue: a) "How about we swap you one In n Out for one Bojangles, LA? Trust us, you won't miss one, we'll have 2 more Bojangles for us, you'll get BISCUITS AND SWEET TEA, and everybody will be happy, mmmkay?" b) Perhaps we can convince the Cook-Out people to make a California style burger and make it just like the In n Out?

3. NICENESS: I have to admit that I pre-judged LA on my experiences in it's somewhat entertaining, amazingly unique, but mostly grumpy, black-sheep of a cousin, NYC. For that, I was wrong and I am ashamed. Perhaps it's the weather that makes folks happier? The lack of need for mass transit systems? Whatever it is, there has not been one time that we have not been treated with courtesy, respect and consideration. I have never felt fearful for our safety {ok, except when Bryant was driving }. In that regard, it's felt no different from home. There have been a few crazies, but what town doesn't have those? And when you have THIS many people, there's bound to be more crazies. Just a tip for those of you reading; if you can't identify who the "crazies" are, it might be you. ;) Seriously, though, it's another factor that swings me back on that left side of the continuum. Then I quickly swing back at 2 am when the sirens start whirring down Hollywood Blvd. That's when I remember that, as nice as it is, "City" is still it's last name.

4. BEING: We have managed this whole trip on a day-to-day, sometimes hour-to-hour basis, based on the needs and desires of all involved. There's been waiting, and lots of riding, listening, and dance parties in the car. Through all of this, we have been able to focus solely on each other. There's been simplicity in the limitation of "things" and walls, the beauty of resourcefulness, and just acting on whims, with no set agenda, save the ones set by the medical professionals. We've had a few meltdowns, some pouty faces, a couple time-outs, and the girls had some issues, too, but overall, it's been wonderful to experience all the madness and excitement together.

I will follow this post with some further posts that will outline more specifics about Clark's EARICLE and some of our journeys along the way, but for now, this will serve as our epilogue. We appreciate prayers for one more round of traveling mercies and we look forward to seeing everyone soon!

This ain't no Disco...and it ain't no country club either...this is LA!

Well, it's been about 48 hours since we landed at LAX and boy, have we learned a bunch already!

1. In and Out Burger is all it is cracked up to be! (not that we're hard to please when it comes to food)

2. Many people here don't have air conditioner, which would lead you to believe that it doesn't get hot enough to really need it. That is not completely true. The air was not working correctly at the apartment when we got here, although at first we though it was just taking a while to cool down. By "bedtime", which is relative because our bodies and the clock are sending two very different messages right now, it was still around 80*. And if you know my husband, you know he does not do hot. Especially while sleeping, which I sometimes find hard to comprehend since he spent lots of summers living in a boy scout tent. I kept thinking it was punishment for not being at band camp. Either way, we reached out to our host and, as of yesterday evening,  there is a brand new AC unit and we are COOL! Hallelujah!

3. The traffic IS as crazy as everyone has said. We have learned to add a zero to the end of the # of miles and that's how long it'll take to get there AT LEAST. As an example, it took over an hour to get to Dr. Lewin's office, 16 miles away.

3. You should always take an extra set of clothes for each person when leaving the apartment. And baby wipes. Turns out that when Brynn keeps asking to put the windows down because she doesn't like the "new car smell", what she means is, "we're driving through lots of hills and curves and I'm going to puke now". Now Brynn has an awesome new "Earicles" shirt from Dr. Lewin's office to commemorate the occasion.

4. Dr. Lewin and all her staff are as wonderful as we were told they would be! It felt like we were coming to see old friends. And my (almost) daily phone call buddy, Sharyn, Dr. Lewin's care coordinator, was every bit as sweet and helpful in person as she has been on the phone.

5. It really is a small world, after all! We are leaving in about 10 minutes to walk down to the corner coffee shop to meet up with a friend from Bertie High who I haven't seen since I graduated 20 years ago! Crazy how much time has passed and that it took coming to LA to see her, but, as I said to her, we look forward to talking to someone who "speaks our language" and getting more of the real scoop on LA.

We walked around the block to CVS and saw this.

Clark with Dr. Lewin

Clark being silly with Sharyn

Santa Monica Pier- we are amazed to be on the beach, looking at mountains!

It's just like Baywatch!! All I need is a red one-piece...and LOTS of plastic surgery,,,or at least a few less In-N-Out burgers!

We weren't born to run, but Cali Here We Come

It's Monday night. THE Monday night that we've planned for and mentally previewed at least a few times. We catch the shuttle from the hotel at 5:45 am to make our 7:20 flight to LAX. Then just a few things to check off an ever dwindling list before Clark's medpor microtia repair surgery on Friday. (Priority one: In and Out Double-Double). Most people don't know this, but this trip has been almost three years in the making for us. I have said to several people that my anxiety level (although surprising low for the past 72 hrs.) will decrease exponentially once we are all through security and the head count still equals 5. No more, no less. I hope I wasn't lying. This is the first flight for all three girls, so of course we had to make it a semi-long (I know Oki friends, no biggie), 5 1/2 hour flight. They have enough to do in their carry-ons for a trans-continental, so let's hope that everybody is sufficiently entertained. It took a few minutes for the girls to grasp the concept of no Wi-Fi for multiple hours. ("So, what do we do?), so we downloaded a few Peppa Pig episodes for Clark and hooked her up with a mono-bud. Everyone else will have on their big girl (and one boy) panties.
My plan is to keep the blog updated during our trip, then post those to the Book. Not everyone that we know would like updates is on FB, so hopefully we are reaching a full audience this way. The other reason I wanted to blog this experience is to hopefully help a future family that may be taking this same journey, just like my NJ friend (who I've never met or spoken to, but hope to) Ed Kittings did for me with his blog "Ethan's Ear". I have read his posts over and over and have laughed, cried a little, but mostly laughed (with teary eyes, of course). There is no way I can hold a candle to Ed's blog, but maybe my type of message will speak to just the right family that needs it.
Some things I have learned so far:

1. The new checklist feature in Evernote is amazing (even when one of the 378 things on the packing list remains unchecked because you can't find the Airline rewards key card even though it's got to be SOMEWHERE! )
2. You can no longer get your renewed drivers' license at the DMV. It has to be mailed. And it takes 7-14 business days. In my case, exactly 12. As in, FINALLY at 2 pm today. 
3. If you lose your wallet, the best place to look is in your wife's glove box, because that was an absolutely logical place to put it 3 weeks ago. (Reaaalllyyy...?) Also see #2, in relation to replacements).
4. Losing your voice completely during the final preparation can prove to be challenging, but also helps to add a little humor (at my expense, of course) to what could have become meltdown mania. 
5. We are surrounded by a level of love and care by friends and family, near and far, that we cannot even begin to comprehend or fully appreciate, due to the sheer hysteria that it would cause. We literally would not be here, able to do what we are doing without this outpouring of support and love. People have given and given and given some more. And I'm not talking small beans here. I am talking the kind of giving that hurts, in a sacrificial way. Like, we were probably a part of some family budget meeting discussions giving. Folks we know that are doing without so we can do instead. Families that have known, or are in the heat of fighting, their own battles. Friends who have sacrificed their time to ask and listen, read and care. Friends who reminded me over and over "It will happen. It has to." when I doubted. Friends who have never once said, "Are you crazy?" (to our faces). And prayer after prayer after prayer. Christ's love and grace personified in a thousand different ways by hundreds of people. 
6. God's grace is truly sufficient. (This was just a review, not new material). I asked him to move a couple mountains and part a few seas, and, as always, he was right on time. 

We appreciate all continued prayers as we venture onward. Goodnight and see ya real soon! 

Stop This Train....

I decided this morning that I just HAD to update this blog today. Like many things in my life, I let it get SOOO behind that I get overwhelmed at the prospect of catching up! But, I am not going to take my usual path of avoidance until it disappears so that I can add it to my "failed projects" list. I am going to grab the horns and do the best I can. 
As I sit here at my desk, John Mayer popped up on my IPod singing "Stop This Train". Unfortunately, although I've rummaged everywhere and I KNOW I just saw it last week, I cannot find the remote to my dock, so the only way to skip over it like I usually do is to get up and go over there, and Lord knows that's just too much to ask. So here I am, listening, balling as I always do, no matter how many hundreds of times I hear it. It brings to the surface how much I want my Dad, and my Mom, and to see my siblings more often, and to not be 35 and feel like I have absolutely nothing figured out, and how much I wish sickness and loss and sadness did not have to exist, and how I wish I had a magic pod that would allow me to travel instantly to see good friends that I don't get to spend nearly enough time with, and how I don't ever want to go one day without seeing or talking to all 3 of my girls, although I know it's inevitable and it's going to be here long before I want it to. OK, whew, the whiney-cry-fest will now cease and desist!
So, you may ask, what's been going on since the end of January?!? Well, since my last post described my journey in returning back to work,  I guess that tells some of the story. Talk about overwhelmed! Not sure if that is ever going to get better, but I can say that I am in a better place on July 6th that I was on February 6th! Have I mentioned lately that I work with the best people on the planet?!?
Otherwise, we have just gotten caught in our daily life survival mode, and boy does this train move FAST most days. Homework, dance and gymnastics, art lessons, church, birthday parties, meetings, doctor appointments, therapy appointments, more doctor appointments, more therapy appointments, being on the phone making appointments, refilling prescriptions, forgetting to pick them up, etc. etc. etc.{ I have to add at this point that one of my favorite things on the planet right now is the Walgreens app  that allows you to scan the barcode on medications and it instantly submits them for refills.Two thumbs up!} Although it is a crazy, tiresome life, I have been so grateful to be back to our "real life" with Clark along for the ride.

How's Clark doing, you might ask?
She is doing GREAT! It is so hard to believe that in less than a month, the day her Dad and I have prayed and longed for will be here. She's going to be ONE! As much as we've never wanted to rush time, we have been told by so many healthcare professionals "by the time she's one, things are going to be much better", that we couldn't wait to be there, for her sake more than ours! She was cleared at the beginning of June for us to begin to feed her more than just formula. And let me tell you, girlfriend is all about some food. She is definitely her parents' daughter! We have been trying to make a daily balance of the risk of trying any food with any amount of texture to the safety of keeping her airway and esophagus open and clear. Most days, we keep that balance in check. Other days, a teeny piece of chicken creeps in and causes 12 hours of trauma. Again, not wishing time away, but I CANNOT wait until she can tell me when food is stuck and when I can reason with her to chew more and drink more often. I also long for the day that we can  be in public without people assuming that she has the croup or some other deathly communicable disease that will surely be passed on to themselves or their children. Not sure that one is ever going to come, but at least she will be old enough to educate them if questions are asked. Bryant and I comment daily that she really is the best baby on the planet! She is also very sweet and funny and brings so much light into our home! Our lives would definitely not be complete without her.
How are the other two?
Well, tomorrow is Jayda's 10th birthday. Yes, I said 10! Double digits, last year of elementary school, 10!! I am telling you, this one is rough. I guess I almost feel like we are crossing this threshold of what may or may not look similar to Alice in Wonderland scenes and we just have to hold on and pray until we make it out to the other side. When I think about the next 8-10 years, all the changes we will all go through, all the firsts, all the trust and faith we will have to muster up, all the freedom we will have to give, I just about get nauseous. I just hope we get to the other side and none of us has lost our "muchness". However, I just know it's going to be all good in the end because she truly is an AWESOME person. She is so bright and loving and attuned to those around her and articulate and compassionate. She has become a wonderful helper to us and her sisters simply adore and idolize her. When I allow my mind to sit in the thoughts of all she has overcome, I just can't help but praise God and marvel at her strength.

Brynn, of course, is just being Brynn: quiet, sneaky, meek and beautiful. What I marvel about mostly with her is how much is going on inside of her head and heart that we rarely see. As much as Jayda is "external", she is "internal". She will be starting Kindergarten this year and we are trying our best to make decisions for her that are about her. We long for her to be her own person, not just Jayda's little sister. We want to find her strengths and grow them. Another threshold here, and although we feel like we have been here before, we know it looks so different through a different set of eyes.
As a family, we have had an exciting summer. We got a travel trailer and have been fortunate to spend time together away from the distractions of home: chores, TVs, work, computers. We have a couple more trips planned in the next month and are looking forward to lots of quiet and quality time together just "being". Getting a camper is something Bryant and I have wanted and talked about for the past few years and, although we still aren't sure if it was the smartest decision financially, we felt like we wanted to take advantage of every second we could milk out of these girls while they still want to be around us and we thought this would be a great way to do it.

Hopefully this will not be the only blog post that I get to in the next 6 months, but if you don't hear from me for a while, please assume it's because we are doing something like this:

Hi Ho, Hi Ho.....

So, I started back to work this week. Or at least I started leaving my house and going in to work and doing something while I was there. I just feel like my brain is mush and I can't make any coherent sense out of what I need to be doing at any given time. I keep trying to find the best way to organize my thoughts, ideas and to-do lists, but then can't even make myself sit and get it all down on paper. I think I am subconsciously afraid that once it is on paper, it will just be too much and I will lose it! I also think I am in a subconscious state of, "this is too good to be true, so surely it won't last". I wish I had been able to DVR my work life for the past 6 months (or even the past year) and go back and watch it so I wouldn't feel so completely out of any possible loop I should be in. It almost feels like I am starting a new job. I just have to keep telling myself-" it's OK, it's going to all come back to you and then you're probably going to wish you were still in that state of oblivion!"
Having said all of that, I just want to express my thankfulness for all of the following (in no particular order):
1. I have a job and work for a system that has been so supportive of us, which has allowed me to take this time with Clark (and Brynn). Not only that, but I have a job that allows me, at this very moment, to help fill the auditorium behind me with the laughter of about 600 Kindergartners as many of them witness their first stage musical. What could be better?
2. I have co-workers that are the most wonderful, generous, loving and hard-working people I know. They have been, and continue to be, right there to help in whatever way they can.
3. I have a husband that understands me, and all my internal turmoil about this returning to work thing, even when I drive him crazy with it.
4. We have friends and family that are willing to help us with the "logistics" of the daily life of our family.
5. We have found someone who has been willing to take on Clark's "high-maintenence-ness" on a daily basis, and (so far) has done it all with a smile and love! This is awesome-er than you can even imagine....
6. I have the pleasure of working with the best teachers ever, who have been amazingly supportive, understanding and patient.
7. Perspective....every day, I get a little morsel of something that reminds me of how extremely blessed we are as a family.

None of us knows what tomorrow will bring, so I am glad, for now, to experience the gift of today.  Suddenly things that used to feel like a hassle feel like a wonderful opportunity, and I hope my mind stays in this place.

Brave

I found this poem on another blog, which I cannot speak about specifically right now, as it will make me have a complete emotional fallout {and those are so rare for me ;)}. After I read it, all I could feel was such gratitude that the Lord has blessed me with such brave little souls and for every day that I get with them! I also marvel at all the other brave little souls that we know and at how much love they have brought to our world. I will never ask "Why?" again...

The Brave Little Soul
by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” he asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.