Parenting is like living in a theme park. Some days you feel like you are on a crazy roller coaster not knowing what awaits you around the next hairpin turn. Other days you feel like you are riding a spinning tea cup, dizzy from answering the same questions and picking up the same messes over and over. There are highs and lows, but we are learning no matter the circumstances, you can still find joy in each day.
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.
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.
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.
