The First Year

It's officially Birthday Week, also known as, "Punky Palooza!" We are kicking off the festivities with a look back at the past year. Since that fateful ultrasound, December 16, 2013, we have been told many times that she likely would not live to celebrate this milestone. We have time and time again prepared ourselves for the worst and time and time again, Caroline surprises us. Before taking a look at the images of the past year, I just want to share some things we have learned.

1. It's ok to be angry. 

2. Everyone has battles and scars. 

3. God is still good. 

All your life you are taught not to question authority, especially that of God. However, through the questioning, crying, and screaming, I would say that He and I are closer. There is an authenticity to our relationship that hasn't been there before. I would like to share something a kind chaplain told us before one of her surgeries. Josh and I had visited with him a few times, so we felt comfortable sharing our frustrations and confusion. Then, of course, we start backpedaling. When you spend time at hospitals, it becomes very clear that there are others with seemingly heavier loads to bear. Then, the chaplain did something surprising. He didn't remind us to be thankful for what God had given us. No. He stopped us right there and said, "Don't ever minimize your trials. It is ok to question God and be angry." He then shared with us that his youngest daughter has special needs and will always require constant care. He spoke with sincerity and hurt when he said, "I will never, ever understand why He allowed this. He did not cause it but He allowed it…and yet, I know He is good. 

The purpose of documenting our journey was never to garner sympathy or make you feel your trials are less. Everyone has a battle and scars- some inward, some outward. Don't minimize your battle or your child's battle. I hope you feel empowered to get angry sometimes, but please, know that He is still good.  

As promised, I have pictures to share, but don't worry, not all 268 of them. It was so difficult to pour over these memories and select which ones to share. We want this video to give you a glimpse of the mountains she has climbed, but mostly, we want these images to show you her indomitable spirit and the immense joy she exudes in spite of her circumstances. We hope when you watch it, that it makes you smile. 

The Best Medicine

Next Saturday, Caroline will be 1 year old. What a crazy, scary, wonderful year it has been. For her party, I thought I would print out a few pictures to highlight this first year. Well, a "few" turned into 268. I reasoned I could put the rest in her baby albums…that I still haven't even opened. Once. It's gonna happen, though…eventually. Anyway, yesterday, Caroline and I went to pick up the pictures. This sounds like a trivial thing- nothing to make a fuss about, right? The thing is, Caroline hasn't really been out and about, except for hospitals and clinics, until this past week. With all of her surgeries and health issues, we've had to be very careful about germs. I know I sound like the typical paranoid first-time mom, but with her special issues, there is no such thing as "just a cold." So this has been quite the week for her. She is meeting new people and seeing new sights and my, it's a big world. Since she has really only been around doctors and nurses, Caroline is a bit, well, leery of people. That may be putting it mildly. Let me put it this way,  if you see us out and about and Caroline cuts her eyes at you while clinging to me for dear life, please know it's not you. She just thinks you could possibly be holding a shot behind your back. You can't be too careful, after all.

Anyway, like I was saying, we were picking up the "few" pictures and the cashier starts by saying, "oh, I saw this one picture…" She starts back pedaling, "well, we don't really look at your pictures, but it was on the top when I opened the machine, and…" I sucked in a breath sharply, steadying myself for whatever question she might have and trying to go through the pictures in my mind. Was it one of the helmet pictures? The nasal stent? The lip tape? The ventilator? Then, relief washes over me when she says, "and I think it was an Easter picture right? With the banner? She's wearing a hat and a dress? Oh that picture was so cute! I have all boys so I never get to take any cute Easter pictures like that." Obviously, I'm not ashamed of the other pictures- they are simply part of our year's memories- but honestly, it just feels good for someone to see Caroline as simply an adorable little girl without knowing her history.

We made a few other stops, and later that afternoon, I set out the pictures on the kitchen table and began looking through them. I had to stop and start back again several times. I had to step away from them until the memories and accompanying emotions subsided. It's a difficult task to look back, but it makes me appreciate how far we have come on this ride. I don't know how I will pick only a handful to show you. I may have to do a 1st year installment - don't worry, I promise I won't post 268 pictures…maybe.  All of the sifting through pictures, reflection, and party-planning can be a bad combination. The kind of combination that makes you want to staple streamers to the wall, eat the cake icing with a spoon, and call it a day.

Then, in the midst of the messiness, she shines her joy. So, when you are stressed and cursing Pinterest for making you feel like a complete failure as a mom for not having monogrammed favor bags, Etsy party hats, and a 5-tiered glorious, unicorn-topped, gold flake-dusted confection that puts your own wedding cake to shame….

There's a cure for that. This cure comes in a messy shirt and surrounded by clutter, but that's sort of the running theme of our life. It is messy but oh, she brings the joy to it.

I'm just going to leave this here…

.

Canaan Bound

So, I'm not very good at this blogging thing…good thing I don't rely on it for my income. I apologize for the lack of updates and for the vagueness of my recent Facebook posts. It has been a busy couple of weeks, but now, it's safe to fully disclose our recent adventures on this ride and bring you up to speed. Hop on and buckle up…

Last week, Caroline had her first big road trip. Before this, she had only gone as far as northwest Arkansas to visit relations. As you can imagine, we were a bit concerned about how she would handle being in the car for 5+ hours. You have the normal worries of fussiness and boredom…and a few more unique worries like airway issues and feeding issues. I am happy to report Caroline was a real trooper and a delightful travel companion. We only had one emergency choking spell the entire trip to Dallas and back, so that's a huge victory.  We headed out on our adventure Easter morning. My parents were already in Texas, but it was difficult being away from home and the rest of our family. Finally out of cold/flu season, we had planned to take Caroline to church for the first time, but as a parent, you do what you have to do…and this Dallas trip is definitely what we had to do. Although we missed our  Easter Sunday traditions, my sister-in-law graciously did an Easter photo shoot for us. Yes, I know I have posted this on Facebook, but come on, it is way too precious to not post again.

My Sweet Caroline. Oh, how about one more...

"What's that? You say He is risen?" 

So, why Dallas? You may remember a post a couple months ago about the passing of our beloved Dr. Honnebier, our amazing craniofacial surgeon. Well, our first emotion was sadness and the next was anxiety. What were we going to do for Caroline? You may also remember some new neurological concerns and the uncertainty surrounding if and how her neurosurgeon would treat them. So, we did what any parent would do in our situation. We researched. A lot. We talked to other parents and everything kept pointing to this team in Dallas. We made the phone calls, completed paperwork, sent records, and finally had confirmed appointments to meet these specialists. Although we were really excited and hopeful, we were also scared out of our minds. I'm a creature of habit. I like my routine. I like eating the same things, and am totally thrown if Kroger is out of my favorite coffee blend. For the past year, ACH has been our home away from home. Only an hour from home and we know where to find the best coffee, the cleanest restrooms, and the quietest waiting areas. But, oftentimes, the best thing isn't always the most convenient or comfortable. We are once again exercising our trust muscles. As we have been studying the life of Moses this year in Bible Study Fellowship, I tend to relate their journey to Canaan to our journey of finding the very best treatment and healing for Caroline. As they traveled to this new land that God promised them, they faced giant doubts and fears, and sometimes, they succumbed to them. The night before our first appointment, I asked you to pray for peace and discernment. Thank you for faithfully praying. I can assure you each prayer is felt and appreciated more than I can express. We first met with Dr. Fearon, our new craniofacial surgeon and we had such a positive visit. Much was discussed but one thing he said that I will never forget is, "I expect Caroline to grow up to be very normal and very beautiful." These are words we have never heard from a doctor. These simple words affirm what I hope and dream for her and really, how I see my daughter. The next day we met with the neurosurgeon and received both good news and some uncertainty. The thing is, I can never become too comfortable with relying on the wisdom of man. Although we feel we have the best team of surgeons working on her behalf, I ultimately have to trust Caroline's life into the Hands of God. In this new land, we still face giants and fears, but we do have this peace and assurance that we are on our way to healing.

So, what's next for Caroline? We have our next surgery May 8th- palate repair. It's a big one, as all surgeries are when performed on your child. It will be a tough recovery but this big surgery will also usher in some big changes. This will vastly improve her quality of life. Once she is healed up, she will finally be able to eat foods besides purees and will be able to make more sounds. Currently, she tries so hard to talk, but can only make breathy sounds like "hi." You know that my heart is aching to hear "mama" for the first time. Then, she will have skull reconstructive surgery in the fall. A shunt is still up in the air. The neurosurgeon does believe she will need one at some point, but we do not yet know when that point will be. Again, this is where that trust muscle is stretched. Thank you for riding, stretching, and praying with us. Lastly, when you get a chance, would you listen to this song? Our pastor introduced us to this song one Sunday, and it has become a favorite. I can't listen to it without crying. It reminds me to have faith along this journey and know that it is so very temporary.

Spring and New Beginnings

Spring has sprung! Sunny daffodils now line my drive. The Bradford pear and saucer magnolia trees in  the backyard are in full bloom. Ah, my yard has life again! When I look out my window, I still see barren branches and mostly brown grass, but I also see flecks of color and signs of life. Spring is probably my favorite season. Well, when fall comes around giving a little relief from the unbearable humidity and heat of an Arkansas summer, I flip-flop like a politician…but right now, spring definitely has my heart. It's a reminder that He creates life from dormancy transforming even the dreariest landscape. Indeed, He makes all things new. I've heard it said that there has to be a winter in order to truly appreciate spring. While I would still be fine living in a climate of perpetual spring, I can assure you there is truth in that statement. While, some days, things still look a bit dreary at first glance, I can think back to last summer when we were experiencing some truly bleak, winter days and gain a fresh perspective. Now, I gaze out at our circumstances and I can see buds of colorful hope springing up from darkness.

Last week, Caroline saw her pediatrician for her last RSV shot (Hal-le-lu-yer!) We weighed her but then she started choking a bit so I asked that we not lay her flat for them to measure her length. We weren't there for a check-up anyway so I reasoned a length wasn't that vital. Well, Dr. B comes in and says, "I need a length on her." Now, she and her nurses are excellent and very accommodating so they figured out a way to measure her without having to lay her flat- thanks, ladies.  I still asked why she needed a length. Her response- it still floors me- "Because Caroline has gained quite a bit of weight since last time and I need to make sure she's not getting fat." My jaw might have come close to hitting the ground. See, if you had told me last summer that there would ever be concern of Caroline "getting fat," I would have told you to lay off the crazy sauce.

My baby, who entered the world blue as a smurf.
My baby, who didn't receive any milk for the first 3 days of life.
My baby, who relied on a feeding tube for nearly a month.
My baby, who couldn't drink an ounce without choking.
My baby, who couldn't breathe out of her nose.
My baby, who has been through 10 surgeries.
My baby, who battles severe reflux.
My baby, the fighter, who has every reason in the world not to thrive, is growing and surpassing limits and expectations.
My baby, caused concern for "getting fat" and I could not be prouder.

Well, it turns out, Caroline is right at the 75th percentile on the growth charts for weight and length! In my former life as a dietitian, I spent a lot of time looking at growth charts and helping parents keep their children on a healthy curve. I had planned on battling texture aversions and feeding difficulties alongside her to just keep her on the chart and, honestly, was hopeful for somewhere around the 10th-25th percentile. How she delights in proving me wrong. So, what else has Caroline been up to besides eating? Well, she's going through this stage of clingy-ness. Caroline has always been a very attached baby, but this is a whole 'nother level of attached…like, I think she would be perfectly content if she were physically attached to my hip via velcro. I'm ashamed to admit I have felt a bit put out.  Why won't she just sleep 4 consecutive hours at night? Why won't she just let me set her in her busy seat so I can shower? Why does she act like the highchair and stroller are now torture chambers? Then, I think about last May when I wasn't allowed to hold her and how I would have done anything for the chance to rock her to sleep. I think about all of those studies I read while I was pregnant and worried how or if she would bond with me. Well, like I said, Caroline loves to take my fears and plans and prove me so very wrong.

Yes, I am thankful for spring and this little bud who keeps growing and blossoming despite the odds.

Jedi Powers and King David

I really hate waiting. Waiting lines. Don't you hate when the person behind you stands way too close?  I have personal space issues, I guess. Waiting rooms. Giant petri dishes. I will try to find the most isolated area and never fails, someone will sit right beside me and hack or talk loudly. That reminds me of Caroline's first surgery. We were still in the NICU. She was 2 weeks old. A very traumatic experience for all of us to say the least. My family and I sit down in the surgery waiting area and a family next to us talks about funerals and burial plots the whole. dang. time.

Annoying Person #1: "At my funeral I want them to sing that one song..."
Annoying Person #2: "Well I want the plot by (so-and-so) not that other one…"

 If there were ever a chance to use some Harry Potter magic to punch someone and then make them forget the whole incident….Oh or maybe some Jedi mind control.
Me: (Throat punches annoying person)
Annoying Person: "What the -"
Me: (Waving hand in front of his face) "I did not throat punch you."
Annoying Person: "You did not throat punch me."
The lesson here is there are plenty of topics to discuss in a surgery waiting room…death is not one of them, but I digress...

If you recall, we have been in a waiting period lately. We came to a fork in the ride. We chose a path. A new path. Then, we had to exit the ride momentarily as this new path is being readied. We stepped away from the platform to reassess our objectives and choices. We bought our tickets. Then we waited. I got a long-awaited call yesterday to confirm we are booked on this ride and given a departure time. As thankful as I was to receive that call, I still felt annoyed by this waiting period.

When I feel overwhelmed by the unknowns and the wait, I go to my guy King David. I am actually aware there are other books in the Bible, but if you were to peek at my notebook, you would think I only knew of Psalms. When I let doubts consume me, I copy down His truths and promises much like a student copies vocabulary words and definitions. There's something about actually writing out the words by hand that helps them soak in to my heart. Lately when I pray, I feel at a loss for words. Then I pick a Psalm and pray those words. I realize David wasn't the author of each one, but he did author most of my personal favorites.

I once heard someone say that if David had Prozac, the Psalms wouldn't exist. I have a problem with that observation. Sure, his Psalms are gritty and seem to waver from one emotional extreme to the next, but consider the obstacles he faced. Consider the long wait he endured to become king. Saul wasn't going to relinquish that throne without some conflict. Imagine being chased by a man and his armies- who were devoted to ensuring your destruction. I know I would find myself complaining much like David does at the beginning of Psalm 13…

"How long O LORD? Will You forget me forever?

  How long will You hide Your face from me?"

Then, see how David changes his prayer…

"But I trust in your unfailing love; 

my heart rejoices in your salvation.

I will sing The LORD'S praise,

for He has been good to me." 

David was flawed, but he was still called a man after God's own heart. God promised him the throne, but he had to endure a difficult waiting period. He made mistakes- big ones but through them he became more appreciative of His grace.  Troubles surrounded him and he did his fair share of complaining. It seems odd that he would change his tune so quickly, but David remembered God's promises - past, present, and future. He could look back and see that God had not failed him yet. He called on God's character.

He is trustworthy.

He is faithful.

He is loving. 

Like David, I am so very flawed. I complain. I make mistakes. Yet, I pray during this difficult wait, that  I will recall His promises and His character. Just like He showed up during that first surgery and kept Caroline safe…and kept me from harming the annoying family…I know He will keep showing up. He hears every grumble, sees every tear, and He answers. I know He began a good work in Caroline. I know He will see us through and He will complete this good work. 

Life: Unfiltered

Today I had a crazy idea. I thought I would try to take a picture of my child. Now, a picture, isn't that difficult. I take several pictures of Caroline every day. Today was different. We were playing and having a great time. Amidst the laughter, I was busy snapping pictures trying to capture each smile, each nose crinkle, each mischievous look. Then, during a nap time, I glance at the dangerous distraction that is social media. Everyday, with Facebook, Instagram, and, my personal favorite, Pinterest, we are  inundated with perfect pictures of perfect homes filled with perfect families and perfect furniture. Suddenly, what once seemed "just right" seems somehow lacking. The thing about social media is we can filter our images and how we are perceived. Nobody wants to post a picture of a burnt dinner with a #homemadegourmet. We post the good stuff- the picture of the happy-Pottery-Barn-catalog family at the pumpkin patch (#blessed, #fallfamilyfunday) when, maybe, the whole experience  was absolute misery( #carridefromhell.) There's nothing wrong with posting the good stuff- I mean that's really what we want to focus on in life! If I can just be real for a minute, I honestly don't want to scroll through my newsfeed and see a post about a kid crying or one filled with complaints about a lazy spouse. I don't believe in using social media as a weapon- especially one formed against your family. That being said, I had a lesson today in filtering and being present.

I got some great pictures of Caroline being Caroline and fully enjoying it.

Then I saw pictures of babies in bows. Caroline has a dresser drawer full of bows that she never wears. I thought, "These pictures are great but how about a few dressed up?" Here's how that experiment went down…

"Uhhh, Mama? You know I don't wear bows." 

"Yeah, this thing is coming off in approximately 7 seconds." 

"Grrrr….Mama makes me so mad. Just wait until she gets that frizzy hair within my grasp. She will pay for this bow incident. "

"Bwahahaha! Victory is miiiiiine!!"

As I am unsuccessfully taking these staged, bow pictures, I notice how toys have taken over my living room. This room used to look nice. There wasn't always towels piled in the chair or blocks strewn across the floor, or a giant baby yoga mat in the center of the room. If you look closely, you can also see a brown Newfie on the leather couch- now, she has been a permanent fixture. I started feeling frustrated with myself…and then it hit me. I can spend time filtering my life or I can actually enjoy what is in front of me. I didn't get any good pictures of Caroline in a bow, but I got some great pictures of her being her and that's all that matters.

 Embracing transparency involves living an unfiltered life. I will keep focusing on the good things but I want the good to be genuine and not manufactured. Yes, I want my house to look nice along with the people in it, but mainly I want to spend each minute enjoying life with these people. My people.

Joy in the Wait

Can you do "enough" for your child?

That's the question I have been asking myself lately. The question I want to ask others.

When you look at your child, do you feel this overwhelming sense of satisfaction that you have done "enough" as a parent? That you have succeeded in raising a healthy, well-rounded, respectful individual who contributes to society?

For the baby who had a rough start…
Do you ask "Am I working with her enough to help her meet these milestones? Am I bonding with her enough?"

For the child who was always ahead of milestones but is now struggling in school…
Do you ask "Am I doing enough to get her the right tutoring or counseling? Am I pushing her enough? Am I pushing too much?"

For the adult who started on the straight and narrow but lost her way…
Do you ask yourself, "Did I take her to church enough? Did I help her too much? Did I let her fail enough? Did I let her fail too much?" Because doing "enough" doesn't always mean doing for your child but teaching them to do for themselves.

I have come to the conclusion that I will always feel I have come up short, that I could have done more…but I want to keep trying. This brings me to our current point in this crazy ride. We approached a fork in the tracks. We chose a path and now we're sort of at a standstill on a steep climb. Is that vague enough? How many times can I use the word "enough?" Well, until we know more, I don't want to share specifics just yet, but for those of you who ask me how you can pray, here it is...

Please pray for peace during this climb. Pray for peace over this decision to choose another course. Pray for us during the waiting. Although we feel an urgency, it doesn't mean everyone else feels that urgency. I'm not the best at waiting- understatement of the century. I like doing. Pray I will hold my thoughts (and tongue) captive to Him while we wait. Although there is pain and fear in the wait, my mom reminded me yesterday that there is also great joy- like nothing I have ever known.

"Be still in the presence of  The LORD, and wait patiently for Him to act…" 

~ Psalm 37:7 

"You both precede and follow me. You place Your hand of blessing upon my head."
~Psalm 139:5 

Thank you, fellow riders.