Don't Forget to Breathe...and Pray

"Don't forget to breathe!" says a cheery, legwarmer-clad, poufy-haired Jane Fonda. I'm 11 years old in my parents' old house doing my mom's 1980's Jane VHS tape and that part always made me laugh. Now, don't get me wrong, her workouts, while not exactly in the same category as Insanity and other forms of torture, are in fact, no joke. However, she says this as we are laying on the floor lifting our legs. I always thought, "what kind of idiot forgets to breathe?"

Fast-forward almost 20 years and I am that idiot. As it turns out, I haven't been doing much real breathing for awhile now. Physically, no I haven't stopped breathing. That would be bad. I'm talking those deep mental, spiritual, emotional breaths...those I have been forgetting lately. I have the bill from our local ER to prove it. The chest pain turned out to be just a scare, but one I needed. The nurse looks me over and asks if I have had any stresses lately. I start giggling and then crying as her eyes widen. Let's see...Caroline just had her 13th surgery and still doesn't want to eat or sleep, so yeah, there's a little stress in our home. At this point I was still sitting in the chair beside the hospital bed, because that's my default spot. The mom seat. Then she makes me lie on the bed and "relax" while they order tests. I begin to take a few deep breaths in an effort to "relax" and try to drown out the drunk guy next door crying because the nurse told him they would have to "stick him" for bloodwork. I used to be a very compassionate person and then I had a child with medical complexities. If you are that scared of needles, don't get drunk at 3 in the afternoon and get in a fight and come to the ER. It's pretty simple. Anyway, as I took those deep breaths I thought, "man, I forgot how good this feels."

Try it. Right now. Take 3 deep breaths.

Inhale....
Exhale...

Inhale...
Exhale...

Inhale...
Exhale...

Last night I was lying in bed consumed with resentment, anger, frustration. Not at Caroline, just at life in general, and if I'm being honest, at God. I had been on the phone with therapists until 10:30pm- which if you know me is like 1 am for most people. I am truly thankful for these wonderful women who are helping Caroline (and me) but sometimes I feel resentful that my child needs therapy while healthy babies are born to seemingly perfect families everyday.
So, as the anger tries to overtake me, I take a deep breath. Then, I was reminded of something I learned in college. A practice I had not practiced in a long time. Gregg Taylor was the director of the Wesley Foundation at the University of Arkansas during my time there and I was blessed to get to know him and his precious wife, Amy, who invited students into their home every week for bible study. One night he taught us "Breath Prayers." It is a very simple prayer. A single sentence you utter to God as you take a deep breath.

I lied in bed last night and inhaled
"God take away my anger"
and exhaled
"Give me peace"

So simple and yet so powerful. The next time you feel overwhelmed with anger at a coworker who is a gossiping, busybody out for your job...inhale and exhale. Pray for clarity and peace.
The next time you find yourself in the middle of a feud...inhale and exhale. Pray for discernment.
When you are overwhelmed with sadness because it's the holidays and you are missing your mama so much...inhale and exhale. Pray for joy.

Don't forget to breathe, loved one.

Girl got her prayer hands ready.

Pass the Snickers

"What's next?"

It's a question I'm asked often...and I do my fair share of asking, too. The past couple of months we've had a nice break from clinics, OR's, and needles. We have been focusing on our therapies and watching Caroline discover all sorts of new tricks. It's been so much fun to watch her figure out she can stand up on her own. I never get tired of saying, "I see you!" and hearing her cheer "yayyyy" to herself.

Yep, September and October have been good to us. Now, it's time to prepare for a huge climb on this rollercoaster. We have known Caroline would need this surgery for 9 months now. We first met Dr. Fearon 7 months ago  and knew at that first meeting he would be our surgeon. Since then, both he and her neurosurgeon, Dr. Sacco, have each performed surgeries on her...so in other words, we trust them. One day I was explaining our relationship with these surgeons to a friend. I told her in my eyes, they are both just below angels but above men. We know we are in excellent hands. We know the facility. We know the staff.

And yet...

I have been avoiding the thought of this surgery.



I know it's necessary and it will greatly improve her quality of life, but I'm still scared. If I let my mind go there and wander around the fears of potential complications and the recovery process, it could get dangerous. Walgreens is just down the road and tis the season for Halloween candy.  It's too early to start binging on the mini peanut butter snickers, y'all. So, instead, I've been focusing on doing as many fun things with Caroline as possible. She enjoys shopping as long as she has her Starbucks blueberry scone in reach. They know her order now...whole milk, no ice, warmed scone. She knows what she likes. We go for wagon rides, bake cupcakes in her play kitchen, and hug the dogs. Those are my kind of therapies.

This week though we have to make time for the not-so-fun outings. Caroline will begin Procrit injections this week and for the following 2 weeks until surgery. This is to help build up her blood levels so that she hopefully won't require a blood transfusion. Yeah, this surgery is the real deal. Here's a link to his website which explains the procedure in detail if you are one of those people who is interested in the details.
The Craniofacial Center Procedure

For those who like a brief summary, here you go...
Basically, the surgeons will make an incision ear-to-ear and will remove part of Caroline's skull (the part affected by the prematurely closed suture) reshape it, and put her skull back in place. Sounds pretty crazy, right? Fortunately, we know others who have gone through the procedure and are doing so well. Like I said, we hope to avoid a blood transfusion but we know it is not uncommon to require one with this procedure. The surgery can take anywhere from 4-10 hours and will require at least one night in the pediatric ICU, more commonly called "the pic" around here. Then she will be moved to a regular room for another night or two. We plan to stay in the Dallas area for about a week as long as everything goes well. She will have pre-op appointments and an MRI to check her VP shunt a couple of days before surgery.

As always, I thank you for keeping up with Caroline and riding this rollercoaster with us. We so appreciate your thoughts and prayers for our warrior girl. She brings me so much joy and I hope she puts a smile on your face, too. I feel like I need to throw this in here, too. I don't know why, but I feel this strong urging so I'm just going to say it. Sometimes it feels like there's no end in sight, and though I don't know your situation, please hear this. If you are expecting or already have a child with special needs, please know it does get easier and it is so very worth it.

"The Hard is What Makes it Great"

"It's supposed to be hard. If it wasn't hard, everyone would do it. The hard is what makes it great."

- Jimmy Dugan (A League of Their Own)

Those wise words pretty much sum up our life, especially the past several weeks. I apologize for my lack of updates. Again, it is a really good thing I'm not trying to make a career out of this blogging business. The silence here isn't due to lack of news. On the contrary, big, great things have been going on around here. I've just been feeling a little burned out lately. I'm still trying to make sense of why our family was picked to board this ride. I read others' blogs and am amazed by their sunny perspectives, wisdom, and random, useful information on how to best organize your entire life with labeled wicker baskets. I worry that my lack of  profound answers and helpful decorating tips will disappoint. Then, I'm reminded that this is all about Caroline. I owe it to you, her champion, to let you know how your prayers are impacting our lives. So, I hope you will forgive my absence and continue riding with us. I can't guarantee answers or recipes, but we'll have fun watching Caroline thrive.

So, another reason I have been slacking on updates....I am busy chasing a little person around all day!

Yes, you read that right. Caroline is now mobile! At 16 months old, she has learned to crawl and scoot all over the house...and she's getting pretty fast, too. She is busy exploring the world around her. Now when I open a cabinet in the kitchen, it's not unusual to find a block or rubber duck sitting in a mixing bowl. Her way of saying, "Caroline was here." Do people still do that? Surely not.

Anyway, Caroline is enjoying her newfound independence and I have to say my body is thankful as well. Amazingly, Caroline's appetite and ability to eat have not been impacted by all of her surgeries, so she was getting a bit heavy to be carrying around all day, you know?

We started physical, occupational, and developmental therapies in August and it is amazing how much Caroline has progressed. It was really hard those first few sessions and some days it is still really hard. She still has trust issues with unfamiliar people and situations. Some days she starts crying as soon as she sees the therapist pull up the driveway. Today was actually one of those hard days- filled with crying, screaming, I'm-not-gonna-do-it-you-can''t-make-me meltdown, raw emotion. Thankfully, we are blessed with the best therapists. Seriously. We got the best by the grace of God. They each love Caroline and pray for Caroline and take time to encourage me too. It's hard seeing her so upset and frightened. She reaches her arms out to me, confused why I'm not swooping in to "fix" it. Those days, I say to God, "what's the point?"

Then, I get to see the gleam in her eyes when she's figured out she's just done something amazing. I get to see the joy in her smile when she races me down the hall. I get to hear her laugh when she "hides" from me in the laundry room and I walk by and act like I can't find her.

These things are what make the hard, almost unbearable moments, worth it. It's not that I wouldn't be excited if she met milestones easily, but when you watch her work so hard to overcome those expectations placed on her at birth, man, it makes these moments that much greater. Like Jimmy says, "the hard is what makes it great."

Clutter, Coping, & Control

The week before surgery is always hard. For me, in many ways, it's even harder than the actual surgery week. Why? Worry. Worry takes over. I've heard since I was little, "Katie's just a worrier" and it's true. I can worry circles around anyone. I worry about what to pack. I worry we will forget something because you know, if you forget your toothbrush, you won't be able to find one anywhere in Dallas….right. I worry about the drive down. Will she get carsick, twice, again, in the middle of nowhere with no Lysol wipes for miles, so your GPS takes you miles off the route to a sketchy Walgreens? That will one day be a memory Josh and I look back on with humor- but that day has not yet come. I worry about her lab draw and pre-op appointments the day before. Will they get it on the first stick? Will it hurt? Don't even get me started on the worries that come with the actual procedure and hospital stay.

Worry can consume me.


So, is it any coincidence that since finding out we would be going through this surgery, I have decided to embark on a major mission in my home? The past couple of weeks, I have devoted my free time, or Caroline's nap time, to "Operation Life Organization & Simplification." See, I'm really not an organized person by nature. Did I have you fooled? It's a common misconception that introverts are naturally organized. I'm truly not. In fact, I am having to train myself to do what feels most unnatural. Instead of sitting down with a book, I pick a project to tackle. I have cleaned, organized, and decluttered every closet, cabinet, and drawer in my home. One day, feeling at a loss because I had organized and cleaned most everything, I grabbed a toothbrush and began dusting my baseboards and then proceeded to wipe them all down. I believe Josh was genuinely frightened that I had finally lost my mind or had been taken over by an alien life form. I've been making regular stops at the local donation center and almost feel close to the workers. Please don't assume it's because I'm an incredibly generous saint. I donate rather than sell because 1. I grew up watching Dateline and assume people on Craigslist and swap pages are crazy and 2. I'm too lazy to write an ad, publish said ad, answer messages about the ad, and meet up with the probably crazy person/serial killer (see reason #1.)
Anyway, the good thing about Operation Life Organization & Simplification, other than having a clean house and actually knowing where the receipt and warranty for the Dyson is located, is the fact that it has given me something to think about. I like being in control. I have absolutely no control over surgery, so I control what I can. As much as I can drown in worries, I can drown in clutter, too.

Throw pillows for days, y'all.

So, I have been bagging up my clutter. The things that have been crowding my closets, shelves, junk drawers- my life- now have new homes. The true junk like the half-used jars of nail polish I bought in middle school- yes, I'm serious, 20-year old nail polish- was hauled to the curb last night and driven away this morning to the dump. The stuff that I just don't need anymore, extra clothes, pillows, bedding, books, has been donated. Each time I drag a big, black sack of stuff to the trash or donation center, I feel a tightness in my chest start to loosen. Does that sound crazy? I actually feel like I can breathe deeper. The other day I noticed for the first time that my jaw was clenched. It felt so unnatural to relax it that I wondered how long I have been clenching.

She's a pretty good helper. Here she is helping me sort through my clothes.
"What were you thinking? Ha! That will never fit again! No seriously, what were you thinking?!" 

Last night, I was standing at the sink doing dishes and the wave of panic hit me- the wave I had been dodging for weeks. I started crying and said, "God, brain surgery! This is so big. It's too big." I felt Him say, "but I'm bigger." Brain surgery is big, y'all. The variables are too many for me to begin to wrap my mind around. All I know is that He is in control and nothing is too big for Him.

"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you."
~ Isaiah 43:2

Go With Your Gut

I'm not an M.D. I'm not an R.N. I do have letters behind my name, not that they are written by it much anymore. I went to school for a long time and worked hard for "M.S. R.D./L.D." but they don't carry a lot of clout with the medical world. Sure, I was trained and learned a lot about medical nutrition therapy, but nothing could have prepared me for this ride of motherhood. Being a mom is the very hardest position I have ever held, but the most rewarding and humbling. We are constantly being told how to mother our children. You can't scroll through your newsfeed without coming across a parenting article shared with (hopefully) good intentions on how formula is bad or saying "no" will cause permanent emotional scarring. How about those tips from your friend on how she got her 6-week old to sleep through the night? OK, I am seriously confused by a baby who sleeps through the night- and a little jealous because my almost-15-month-old still wakes up at least once.

I'm slowly learning you can't compare your situation to another's. While sometimes I definitely need advice and tips from other moms, I'm learning to trust myself. Before I became a mom, I thought that "Mother's Intuition" stuff was completely bogus- a lie concocted by some moms to make them feel good about their decisions. Then, my life changed.

Remember in one of my very first posts I mentioned that Caroline was diagnosed with ventriculomegaly at our 18-week ultrasound? Well, all through the remainder of our pregnancy, her ventricles were measured and monitored but they could never offer a reason for them being so enlarged.  They said they would have to do an MRI once she was born. When she was 3 days old, she had her first MRI. Her ventricles were still very large but they said they wanted to keep monitoring them. Fast-forward to her cranial surgery last September. Ventricles were getting bigger but still they couldn't diagnose a cause, but also assured us it wasn't anything too concerning. As you can imagine, I was feeling a mix of emotions. Relief that the neurosurgery team didn't think the situation severe enough to intervene but also an underlying fear that maybe we were missing something. Now, at this point on our crazy ride we are supposed to be wearing the helmet. If you follow Caroline closely, you may have thought once or twice, "hey, I don't see her in that helmet much, what gives?" Well, this may sound crazy but I didn't feel convinced about the helmet. We tried it off and on for a few weeks but still something was nagging at me. Like I said, I'm not a doctor. I'm not a genius and I don't pretend to have answers…I just had a feeling. So, I prayed for guidance. That feeling did not dissipate. Then after asking for more testing, Caroline was diagnosed with ventriculomegaly and hydrocephalus.

Hydrocephalus: (from the Greek, hydro- "water" and cephale- "head") is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles of the brain.

At this point, the neurosurgeon still did not want to take action. Now, I'm not a whacko who wants something to be wrong with my child, but unfortunately, measurements don't lie. Caroline's ventriculomegaly and hydrocephalus were worsening which could lead to permanent brain damage and even death. This was the point we decided to go to Dallas for another opinion. The craniofacial surgeon confirmed my apprehension about the helmet. Placing a helmet on a child with hydrocephalus can actually cause brain damage. He and the neurosurgeon wanted a better look at her brain to determine the cause for the hydrocephalus. You may remember that Caroline had another MRI last month. At first, it seemed things were stable. Then we saw our new neurosurgeon this week. Unfortunately, her hydrocephalus has worsened- to the point that the excess fluid is actually causing her brain to deform. We don't yet know if this will result in permanent damage but time is of the essence. We will be going back to Dallas for surgery soon. The neurosurgeon will place what is called a Ventriculoperitoneal Shunt 
This type of shunt isn't the least invasive or most ideal, but unfortunately, Caroline's unique brain anatomy does not allow for the easiest way.

Don't think I'm patting myself on the back for getting another opinion or pushing for more tests. I believe this intuition is a gift from God. His still, small voice saying, "keep pushing, don't give up." Although we face many trials in this lifetime, He is ever so gracious to His wayward, learning mama sheep.

"He will feed His flock like a shepherd. He will carry the lambs in His arms, holding them close to His heart. He will gently lead the mother sheep with their young."
~Isaiah 40:11 

So, here's my piece of parenting advice….
Pray. Listen. Go with your gut, even when it seems really hard. Oftentimes, the hardest way is the best way.

Also, when you are feeling guilty about having your baby go through another surgery, a trip to the toy store helps a little.

Put the Oxygen Mask on Yourself First...

You've seen the safety demonstration. The flight attendant gracefully places the oxygen mask on herself to show you what to do in case of an emergency. Her movements are so fluid and seamless. While I have flown several times, I have never been placed in the position of having to actually remember any of the safety demonstrations; however, I can imagine I would not be nearly as graceful. In fact, I would be doing well to not pass out from the excitement of it all. I'm not good in an emergency. Good thing I switched my major from nursing after my freshman year.

Anyway, the point of wearing the oxygen mask first is because you can't really be helpful if you aren't conscious. Pretty basic, right? Yet this is such a difficult concept. This time last year, we were in survival mode. We were going to ACH for surgeries every other week, sometimes every week. My only concern was keeping Caroline alive. We were all taking turns offering our oxygen masks. We were exhausted, burned out, and miserable- but she kept breathing. Testing, insulin, carbs, glucose sensors, those words did not hold space in my thoughts. I was managing my diabetes, but just barely. My endocrinologist, bless her soul, was worried but she always said, "I know you have a lot on your plate" or "It's hard to do everything right when you're spending so much time at the hospital with Caroline." At our visits every 3 months she would ask about Caroline. She would touch on my reports- yeah there were a few highs and lows but my average numbers were always really good so she didn't lecture. This last visit was different.

She asked about Caroline so I updated her on the latest. As a doctor, she likes to hear about surgeries and recovery but as a mom she likes to hear about her little quirks and games.
"Well, palate recovery is going well…still have a big cranial surgery in November…she can do 'The Itsy Bitsy Spider' which is really encouraging to me, I know she must be smart…" She nods politely and places a hand on my arm and says, "How are you doing? I mean, like, mentally, how are you doing?" I tell her it's getting better- some days are harder than others but overall, things are much easier now. We go over my reports and really the numbers look even better than I would have expected. She says, "OK, now it's time to start taking care of yourself again. Get back on track with your diet. Exercise." One of my dear friends and mentors told me a few months ago to put the oxygen mask on myself. Sometimes it seems incredibly selfish to leave Caroline with someone so I can go exercise. Sometimes it feels really selfish, when I have that shaky low, to gulp a box of juice before I get back on the mat to play with her. Diabetes complicates things. I really do want to just focus on taking care of my baby, but in order to be healthy enough to take care of her, I have to be a little selfish sometimes. So, here I am, bottle of water by my side, continuous glucose sensor in my stomach, and back to logging religiously on My Fitness Pal….apparently the App doesn't do anything unless I actually use it!

Learning How to Sail

Never Say Never.

Such a tiresome cliche, but that's the thing with those old sayings, they didn't become cliches without being true. Over the past year, our family has relearned this truth over and over. Yet, the past 2 weeks we have been hit upside the heads with the humble stick.

If you remember, we are in the process of starting therapy for Caroline. She has gone through all 4 therapy evaluations and now we wait on the therapists to complete their reports and then we will meet with our Early Intervention coordinator to choose how much and what type of therapy we want. Now, there's someone I never thought I would be dealing with- an Early Intervention specialist with DHS. When I was first contacted by the therapy center, I was informed we would have to go through DHS since Caroline is younger than 2 years old. "It's just protocol" she said. I was immediately uncomfortable with the idea. Though I told myself "I'm not an elitist" (though I discovered that yes, just call a spade a spade, I am a snob) I didn't feel we were "DHS material." I reasoned those services were for those less fortunate, bless their hearts. Then, I was educated. I met with the coordinator and learned about DHS and their services. Then, I met with each therapist. Though the coordinator had suggested applying for TEFRA- an extension of Medicaid for disabled children- I brushed it off. We had been hearing the TEFRA speech from ACH since before Caroline was even born. I said to myself, "well that's not Caroline, disabled...that's not our situation...we have private insurance."
Then, I met with the physical therapist. She played with Caroline and completed her evaluation and then asked me, "have y'all looked into TEFRA?" I said yes, which wasn't a lie, but that we had private insurance and had already met our in-network and out-of-network deductibles- a really twisted sort of brag now that I think about it. Anyway, she nodded and explained that our private insurance does not cover any type of therapy for "children with disabilities." That sort of knocked me over. We had been sitting on the floor with Caroline and I rocked forward and said, "not even with all of her diagnoses?" "No, sadly they will not pay. Now, if she were an adult and had a stroke or car accident and needed therapy, they would, but your insurance company does not pay for therapy for children." She went on to state that Caroline is "severely delayed" and would need more therapy than DHS would cover.  Later that evening, Josh and I were going over the numbers. There was no way we could afford therapy on our own. So, here we are doing what we said we would never do- pouring over the application for TEFRA. Medicaid for disabled children. I don't like it. I don't like the terminology or the connotation, but I am learning in order to make it on this crazy ride, you have to use what you are given.

Caroline may be "severely delayed" right now, but I have promised her that we will do everything we can to ensure she won't be for long. No matter what, Caroline won't be defined by a diagnosis or disability. She is our mighty girl and will be defined by her infectious laugh, tight hugs, and big kisses.

Sometimes it feels as if life is just tossing you back and forth like a little ship on the high sea. Have you ever been on a boat in a storm? It's scary and unpredictable. I'm all for boating but I want smooth-as-glass waters and sunshine. Being Caroline's mom has been a blessing because it is teaching me how to sail in any weather and put trust in the Captain who knows how to navigate the waves. Now, our family is in the middle of another storm. Josh's dad was recently diagnosed with advanced, Non-Hodgkins Lymphoma. The type he has, follicular, is treatable but not curable, yet. We have been reading and learning a lot in these past 2 weeks about sailing this particular ship. We have learned about bone marrow biopsies, PET scans, and chemotherapy. We don't like it. We hate it, but we know our Captain is good and He will provide the resources we need to sail this ship.

Life can change in a phone call. Never say never. Be kinder than necessary. Love each other hard.

It's All Gonna Be Okay

Now that we have a nice, long surgery break (fingers and toes crossed) it's time to start looking into therapy for Caroline. We are currently in the middle of the evaluation process. It's a strange thing watching your child be evaluated for therapy. On one hand, you know she needs it but on the other you feel a bit of resentment at the thought of someone judging your child. Hello? She's obviously perfect, but yeah we need help. The thing is I know Caroline is delayed- and with all of her surgeries, hospitalizations, and anomalies, she has good reason to be. I also know that I need help teaching her. The first session didn't go so well, meaning that Caroline screamed at her for the first hour. Eventually, she did warm up to the stranger enough to allow her to sit on her play mat, but not too close. I apologized and said, "she just really doesn't like people." After all, most of the time when she meets someone new it is either a doctor or a nurse. I actually found myself apologizing a lot through out the session. I have this aggravating desire to please people. I really want you to like me. I want you to like my child. I want you to approve of me and my parenting. I want to pass all of your tests. Then the other side of Katie says, "don't you dare judge me or my baby." Isn't my mind a scary place? At the slightest frown or furrowed brow of the therapist, my iron wall of defense is up. I knew the first session would be difficult. I had tried to prepare myself for the worst, but it doesn't ease the worries that creep into your mind or the aches your mama heart feels at the sight of real tears rolling down your baby's cheeks. Thankfully, the next therapy evaluation was a success. Not so much because Caroline "passed" her tests, but rather that she passed Caroline's. Although she started out by clinging onto me for dear life, in no time at all she was sitting by the therapist and reaching for her. I thought I might feel a twinge of sadness at Caroline reaching for a stranger, but I didn't. I felt a little hope begin to rise. Hope that she wouldn't always be afraid of people. Hope that she would develop physically, mentally, and socially.

A little hope is empowering. Hope can grow in dark places if you let it, but the thing I have learned is that for hope to grow, I can't focus on the worries and aches. I can't think of the "what-ifs" I have to focus on the "but-hopefullys." Our doctors always told us with Caroline to "hope for the best but prepare for the worst." We soon learned that was an impossible task. Once you start preparing for the worst, it takes us all the place in your heart for any hope.

My dad is a hope-filled person. He is my biggest champion. Remember my Clairee told me to marry a man like my dad? That's because those kind-hearted, soft-spoken, gentle men make the very best husbands and dads. Ever since I was little, my dad was the one I went to when something was wrong. He'd say "have you been cryin'?" and he would take all the time it took to listen and sort out the problem. Then he would say "it's all gonna be okay." That is my dad's mantra. To this day, when any of us has a problem, big or small, we go to Dad. I still need to hear him say, "it's all gonna be okay." Even in those scariest times when I really didn't know if it would be okay, my dad would say it and I would believe it. I truly believe I got the very best dad, I'm sorry. I know most people feel that way, but I really did get the best.

Our family is dealing with some hard stuff right now. We are numb with sadness. Thursday evening when Josh told me the sad news, I began crying and then Caroline saw me and started crying, too. Although that doesn't sound very positive, her therapist assured me she is ahead developmentally in that aspect. She said the most important things we can teach our children are compassion and empathy. She explained if they aren't learned by age 6, then they are never truly learned. So, there you go, even in the midst of grief, He allows a little light to shine through. Last night, I asked the Father, "how do I know it's all gonna be okay?"

"And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering. We, too, wait with eager hope for the day when God will give us our full rights as His adopted children, including the new bodies He has promised us. We were given this hope when we were saved…
Can anything ever separate us from Christ's love? Does it mean He no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? No, despite all these things, overwhelming victory is ours through Christ who loved us."
~ Romans 8: 23-24, 35, 37

I know it's all gonna be okay because of this simple truth- Jesus saved me from the very worst. As a Christian, I don't have to prepare for the worst, only wait with eager hope for the very best.

Life Lessons from Miss Annette

After graduating from college, the next step to becoming a registered dietitian is completing an internship. As a dietetics intern, you are at just about the lowest level of anyone in the entire medical facility- way below medical students. You may feel excited and slightly important in those dress clothes and white coat, but then you actually have to navigate your way from the critical care unit to the oncology floor, and you start to doubt your abilities and knowledge. Then, you make your way to the right place and the unit clerk glances up at the white coat, scans her eyes up and down you, and sees the "intern" badge and your feeling of inferiority is confirmed by the audible sigh and bored look on her face. This was my first run in with "Annette." As the weeks went by, I came to appreciate her, and in turn, I believe she became less annoyed by my presence. I learned it was she who held the power- the charts- and in order to obtain a chart, you had to know how to approach her. There were unspoken rules. Whenever an arrogant med student disrupted the order of procedure by assuming he would just grab a chart off of her desk (preposterous idea), Annette would close her eyes tightly and say in a stage whisper, "Jaysus gimme stremph!" If someone committed a more serious offense, she wouldn't bother with whispering- she wanted you to know you were wrong and that you better pray for divine intervention also before she whooped you. She wore her hair in a tight bun on top of her head, and when she got really mad, she would get to trembling and you could see that shiny, black bun start to shake- that's when you knew to take cover. As unit clerk, she was responsible for answering the patient call lights, so I am sure you can imagine how exhausting that can become after 12 hours. This is just one of many unpleasant calls from unsatisfied customers.

(Buzz) Miss Anette: Yes, Mister Smith
Mr. Smith: My tv ain't working
Miss Annette: Mmm-hmm, somebody be in there soon, Sugar
Mr. Smith: I been waiting for an hour now! What the ---- is going on? I am so sick of this ---- place and you ---- people.
Miss Annette: (trembling) Sweet Lord Jaysus gimme stremph!

Good thing for those patients that the Sweet Lord always came through for her because, as far as I know, she never did whoop anybody. The past couple of weeks, I've been dealing with some anger issues myself. If you spend anytime at all on social media, you are probably bombarded with negativity. While it's true there is an abundance of bad news these days, we often forget to focus on the good news. In this age of social media, we have become so accustomed to sharing our opinions on every topic under the sun. We say things that we would probably never say in-person, and to top it off, we have become so used to this that we believe everyone is dying to know our opinions. Like our "friends" (who we never see or actually talk to) are thinking, "oooh I wonder how Katie feels about…" To quote a sweet friend, "What must I think of myself?!" There are some topics that I am very passionate about, and I am proud of that; however, I am not always proud of the way I share my feelings. If I choose to harbor hate and anger and feed those emotions, that is what comes out through my words and actions. While I can still hate the offense, I could choose instead to harbor and feed my love for the solution. It doesn't feel very good to be on the receiving end of someone's opinion. There are times when people want to share their beliefs for what caused Caroline's special circumstances and at those times I would like to completely annihilate those people. As she gets older, I know Caroline will hear others' opinions and be placed in situations where she has to explain her history. While I want her to be knowledgable and eloquent, I also want her to be kind. It certainly doesn't help her if I am not modeling that kind of communication. I'm all for sharing beliefs and convictions, but I want to make an effort to speak the truth in love.

I need to think before I give my advice to a friend…
Is it even wanted?
Before I share my opinion…
Is it Right? "Well, yeah I'm always right…"
Is it Necessary? "Well, maybe not…"
Is it Kind? "No, I guess not…"

"And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise." 
~ Philippians 4:8 

If I check my thoughts and words by those standards, often it is truly best for me to follow Miss Annette and close my eyes and whisper, "Jesus, give me strength."

Around here, when we feel overwhelmed, we sit on the porch and play with our bubble wand. Sometimes we blow bubbles and sometimes we wield it like a light saber- both good therapy. 

Steel Magnolias

Do you have a favorite movie that you could watch over and over again? One that you can recite every line and never get tired of hearing those words? I have one. It's hands down my favorite movie of all time- which sounds oh, so cliche since just about every Southern girl would say the same- but that's alright by me. There's a reason the story resonates with so many people. The movie is based on a play based on a true story. A story that, while so unique, is also so universal for Southern women…and men. On a college spring break trip to Cancun, the guy who was just a friend, but would years later become my husband, was around when I had a low blood sugar spell. I didn't act quite as dramatic as Julia, but he held up a drink to my mouth and drawled, "drank the juice, Shailby." At that moment I said to myself, "that is going to be my man." Now, it may seem I would be drawn to this movie for the obvious similarity between myself and Shelby, but I fell in love with this movie way before juvenile diabetes came into my life. In my former life as a diabetes educator, while trying to explain to my patients the differences between type 2 diabetes (which was most of my patients) and type 1 diabetes (me) I often said, "you know like, Steel Magnolias?" to describe my condition. That typically got 2 different reactions from people…1. sheer horror and shock that I was able to work and was not, in fact, laid up in a hospital bed on life support or 2. blank stares of unfamiliarity. Now I realize the movie is getting a little old, but come on people, this should be mandatory viewing! Going back to reaction 1 of sheer horror and shock, I will admit the movie does not do a great job of accurately portraying the life of a type 1 diabetic but let's just leave it at that.

So, why do I love this story? I love the characters. I love the strong, yet gentle women who support each other through good and bad. As Truvy says, "laughter through tears is my favorite emotion" and really that's what you feel throughout the movie.  I think everyone who gets to know these characters is reminded of women in their lives. Know a Ouiser? You know you do. We all know that crazy, old, woman who can be such a grouch that you want to just slap her and then you turn around and here she comes bringing you cucumbers from her garden. Every young woman needs a Miss Clariee in her life to remind her how to be a gentle leader. I know my Clariee. She is one of the most business-saavy women I know, yet the most genteel. She gave me some great advice as a wide-eyed college student. She said with tenderness yet firmness, "Now, Katie, when you get ready to get married, you marry a man like your daddy. You marry a soft-spoken, gentle man, or you will be very sad." I think you probably know an Anelle. Lord, you just love her to pieces, but bless her heart, if she don't drive you crazy. Don't underestimate Anelles, though. They have a great inner power and are essential when it comes to putting things back into perspective for you. They don't let personal tragedies interfere with their abilities to do great hair, either. Oh, and I hope you know a Truvy. She can make you smile, laugh, and feel better about yourself when you feel like everything has just gone all pear-shaped. She's the one you sidle up to at a party when you want to hear a good story, especially if it involves a secret about your nemesis…not that you have one, just saying…

I know a M'Lynn. She is my very best friend, my rock, and my mother. She is the strongest woman I know. She picks up the pieces and puts everything back together when life has truly gone awry- all  while keeping herself together. I have never seen my mother fall apart. I don't know how she does it. Myself, well I'm more of a Shelby- highly emotional and stubborn to a fault. When I get overwhelmed, I just want to sit and cry for a bit, but my M'Lynn, she will jump right in and clean the house from top to bottom, cook a roast, and bake a pie without a hair out of place. When I told her I was expecting, she was so happy for me but I know she worried. Since my diagnosis at 16 I had heard many times that a baby might not be possible, that it might be too hard on my body, but much like Shelby, "I'd rather have 30 minutes of wonderful than a lifetime of nothin special." Like the Eatentons though, my mother and father always said all they wanted for me and my brothers was happiness. Here I am today, holding this wonderful creature and I want so much happiness for her. Like I have said before, I buried the standard plans you have for your child like playing the piano or excelling at tennis. Caroline loves to prove me wrong, so she may excel at each of those things. Mainly, what I wish for her is to be a Steel Magnolia. I pray she knows her worth as a woman. I pray that she understands that being a woman does not change the calling He places on her life. I want her to know that being a woman does not make her a different kind of Christian. 

I know that many have already weighed in on this topic but I can't let it go. I have lost sleep over the Duggar family for the past few nights. I have never been a fan of the show, but I absolutely do not hate them. I don't agree with most aspects of their lifestyle but until recently, it didn't affect me. So why do I care so much now? As a mother to a daughter, I am the one who is supposed to model what is acceptable and unacceptable. I never, ever want her to think someone assaulting her and taking advantage of her is acceptable. Yes, there is forgiveness and redemption. I am the chief of sinners. Redeeming love has been my theme and shall be until I die. I pray that Josh has truly found recovery and redemption, but mostly I pray for the girls who were violated. The girls, who are now women, will never be the same. They and their relationships will be forever affected by the heinous acts and worse, the cover-up, which is the true crime here. No adult in this case acted responsibly at any point. To those who say the sin was a private matter and "dealt with" I beg to differ. Reporting something to church elders a year after the criminal behavior, yes it is a crime, began is not "dealing." Sending the perpetrator, who let's face it is also a victim of his sheltered upbringing, to do manual labor as therapy for 3 months, (his mother later admitted no counseling was ever involved) is not "dealing." Then, sending him to get a "stern talking-to" from a police officer buddy who did not file a report and would later be sentenced to 50+ years for child pornography charges is not "dealing." I know some make the excuse that he was "only 14, a child." He was 14 when this started and continued the acts. He knew they were wrong. I grew up with 2 older brothers, and I can assure you,  nothing about his actions was normal. I absolutely hate that the real victims, the daughters and the friend, are suffering once again, and this time publicly. I hate that the media is loving the demise of this family. Like I said, I do not hate them or wish them ill-will, ok I will admit I have been wishing for some punishment for the parents and clergy who are mandated reporters and did not report the offense-ah, there I go again. So, the other day, as I am trying to deal with my anger about this situation,  I go for a run. (Caroline is a year old so now officially I have to quit making excuses and get back in shape.) So, as I run, I listen to music. A rap song comes on and the words stop me in my tracks. If I am so concerned about what my reaction to the Duggar scandal tells my daughter, should I not be concerned with my acceptance of these lyrics that degrade her as a woman? My sister-in-law texted me the other day about this topic. She had her radio going and heard these lyrics:

Shawty, I don't mind if you dance on a pole,

That don't make you a ho

She and I agreed that actually that does make you a ho. When did we decide as women that being objectified was acceptable? When did we decide that we should wear certain clothes, style our hair this way, or have a 24" waist to have any worth? The media tells us we should and we obey. 

Well, I pray that my Sweet Caroline would have a rebellious, stubborn streak like her mama Shelby to forge her own path. I pray she would have the quiet strength and deep love of my M'Lynn. The good nature and warmth of  my Truvy. I pray for the practicality of my Anelle, and the politeness and wisdom of my Clariee. I even pray for a good dose of my sassy Ouiser in her- that she would have the strength to be an independent woman and the orneriness to stomp a mud hole in the side of any male who tries to get in her way. 

My two Steel Magnolias. Tender as Magnolia blossoms but tough as steel

Expectations & The Unexpected

It's been a little over 2 weeks since our palate repair, and we are so happy to report that Caroline is once again surpassing expectations. After each surgery, there is always an adjustment period- some more difficult than others. Her lip repair last December proved to be an extremely difficult recovery. Whenever I expressed this to her surgery team at our follow-up appointment, I heard, "Oh really? Well just wait until the palate surgery." So, as you can imagine, we weren't exactly looking forward to it. Well, in true Caroline fashion, she doesn't adhere to my plans. Nope, thankfully, Caroline follows her own and surpasses my expectations.

We received a lot of questions about our reasons for choosing to go with a different surgeon and hospital. I want to be clear that this decision was not made without some hesitation and even sadness. We have been through a lot in this first year with ACH. We have met many fine physicians, nurses, and ancillary staff, and formed relationships. Back in April, we made the trip to Dallas to consult with this new team, and when we returned, a nurse and friend from ACH called. When I told her we had been to Dallas, she just said, "Dr. Fearon? He's excellent." That was a difficult conversation. It almost felt like a break-up, but even worse. When you entrust your child's life with someone, you form a unique bond with that person. So, why leave? With the passing of our beloved Dr. Honnebier, we knew we needed to find a new craniofacial surgeon, preferably one that could manage her cleft and craniosynostosis, and  thankfully, we found him.

Surgery was scheduled for Friday, May 8th, so we spent most of Thursday at the hospital for pre-op appointments. Every single person we met was so kind and took time to make Caroline feel as comfortable as possible. We met with Dr. Fearon and he explained the procedure in detail. Whenever surgeons do this, I nod a lot and try to act like I understand everything they say, but really I'm not paying attention at all. I realize that sounds concerning, but this is where I rely on Josh and at least one of my parents to process this information for me. In that moment, all I can think about as I hold her is how I can reassure her and let her know how much she is loved. Then, he measures her head and I am so happy to tell you that, for once, her head has not grown over the past month! Also, he felt of her head and confidently said he believes the cranial pressure has decreased. There is no scientific explanation for this, so I credit God and you, her prayer warrior, for this unexpected, excellent news.

Two of the bravest girls I know. 

Surgery day has arrived. I can't describe all of the thoughts and emotions that race through your mind, and won't even attempt it. All I can say is that morning went very smoothly. We had the sweetest nurse caring for us in the holding area before Caroline was taken back to the operating room. We met with each doctor again, signed consents, and then it was almost time to let her go. For the first time, we are offered Versed for Caroline- although I wish they had some for parents and grandparents, too! If you aren't familiar with Versed, this is a wonderful, magical elixir that chills your child slick out. At this point, Caroline doesn't know or care where she is or what is going on- she is floating on the magical Versed cloud. The operating room nurse comes to take Caroline and when I hand  her over, there are no tears- from Caroline, anyway. We head to the waiting area and receive frequent updates that our girl is doing well. During her palate repair, she also had ear tubes placed by an ENT, so he comes out first to tell us everything went well. Then, about an 90 minuets later, Dr. Fearon comes out bouncing and smiling- that's always a good sign. After a few surgeries, you develop a knack for reading doctor's faces. Instead of the typical routine of getting the rundown from the surgeon and then waiting for 30 minutes for a nurse to come get you to take you back to your awake and crying child, Dr. Fearon takes us back immediately. He's a bit of a renegade but I like that about him. Caroline was still sleeping peacefully and he instructed us to let her sleep for as long as possible stating it would be much easier on her. Of course, I was happy to let her sleep knowing she likely wouldn't be so peaceful once she woke up. It's always difficult to walk back to the recovery area to a screaming and scared child. I realized then that Dr. Fearon wanted me to be the first person she saw when she woke up- and for that I am so grateful. When she finally woke up, the nurse wasted no time in making sure she was comfortable. She had an IV pain medicine ready to go followed by an oral, then another via IV. I really didn't expect her to eat or drink at all the first day, but wouldn't you know, Caroline the Lionhearted is sitting up gulping an orange gatorade 30 minutes later. Since it took some time for a room in the pediatric unit to open up, the nurse brought her a portable DVD player. So, there sits Caroline, drinking and watching Little Einsteins like nothing happened.

"Where's Caroline??" Playing peekaboo before surgery

Our mighty girl in recovery. They let her doll go back to surgery with her and when they got out, she managed to be wearing Caroline's socks. No one can resist playing with a doll.

Once we made it to the floor, the staff did an excellent job of keeping her comfortable and happy. They let us unplug the IV pole and take her for walks around the unit. Caroline isn't much for sitting. She has never been one of those "sit and rock me" babies. She prefers to be on the move- or rather you be on the move. She's just concerned for my health is all. I won't sugarcoat it, the first night is always rough. She didn't sleep but didn't want to drink and the only thing that kept her somewhat happy was her Mickey Mouse Clubhouse DVD. My sweet husband held her almost all night and let me take the couch. The crying, the beeping of machines, and Goofy singing about building a "birdie-house" over and over made us feel like we had entered the inner circle of Hell. OK, maybe not that bad, but it was pretty awful. The next morning when Dr. Fearon came in to check on her, she was clapping, playing peekaboo, and watching her Mickey Mouse. She had also managed to drink and eat, so he decided she was doing too well to be at the hospital. We stayed in Canton, Texas which is a tiny town about 45 miles from Dallas. We wanted to stick close to the hospital for a few days just in case. We were so thankful to have my parents there for support. Later that day once we got back to the cottage, they offered to watch her so we could rest. I assumed we might sleep 2 hours and do some laundry. Nope. We fell asleep and woke up 5 hours later. Yes, I have the very best parents ever.

We have only had a couple scares that first week home and, thankfully, Dr. Fearon is good about answering emails and calls to calm my worries. Overall, this has probably been the easiest recovery which was unexpected but very welcomed! So, next on the agenda, is getting used to this new palate and all that comes with it. She is currently fascinated with clicking her tongue and is  looking forward to expanding her food options beyond purees. We will have an MRI in June to help determine if she will will need a brain shunt and what type could be used. Then, back to Dallas in July for follow-up appointments.

All I can say to you is thank you- which never seems like nearly enough to express the gratitude my family has for you and your love and support of our Sweet Caroline.

First sit-down restaurant experience just 2 days after surgery. Had to bring the doll along of course, still wearing Caroline's socks. She had milk but was more interested in helping her daddy drink his sweet tea. It's in her blood, y'all.

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.