The Speed Bumps to Joy

We are already over halfway through October and once again, I have been slacking on updating all of you fellow riders. The lack of updates isn't due to lack of events. On the contrary, so much has happened that it's an overwhelming task to decide where to begin. Unfortunately, I haven't been in the right frame of mind to share lately. If I am going to truly embrace transparency, I have to say I haven't been choosing joy, but rather anger. We have had a few halts and mechanical failures in the ride. When these setbacks happen, I immediately revert back to feeling frustrated and questioning God. Why Caroline? Why does she have to face this now? Why are we dealing with this one, incredibly difficult person at Children's? So many questions, and I will never ever understand why. Much like Job, I have thrown my hands up in anger and asked why He has allowed this. When we feel like we are going steady on the ride, it suddenly stops, and sometimes even goes in reverse. Then, God laid it out for me. I'm not meant to understand why, but I am called to trust in who He is and His promises. The thing about trust is it has to be tested and exercised in order to grow and boy, has it been a trying month. 

So, remember back about 6 weeks ago, Caroline had her cranial surgery to open the fused suture? Well, after this particular procedure, she was supposed to wear a molding helmet to help ensure her skull and brain grow normally. It was initially made imperative that she wear the helmet immediately after surgery. Great, let's get this helmet-wearing started and get on track again. Not so fast. They wanted to measure her head again after surgery before ordering the helmet. Fine. We measure the week after surgery, wait 2 weeks for it to be delivered, and the helmet is completely wrong. It doesn't fit. It's not even the right type- oh yes, there are numerous types of helmets for babies. Who knew? So when I say it doesn't fit, I don't mean it was a little uncomfortable. We were prepared that it would be an adjustment period for all of us. We couldn't put it on her head without a screaming fest that ended with all of us in tears. Even though our friend, Helmet Guy, kept insisting it was right and we would "just have to get used to it" I was not satisfied. So, we set up an appointment with the neurosurgeon and he agreed the helmet was not correct and asked us to go back to orthotics and ask for a new helmet. I was happy that someone finally agreed with me but also dreading the confrontation that was about to take place. I said to nurse Lea, "um, he isn't going to want to see us." She peered at me over her glasses and said, "I don't really care what he wants. This is about what is best for Caroline." Nurse Lea don't play around. 

Here we are getting measured yet again for a helmet. This time she didn't cry at all but she didn't take her eyes off of Helmet Guy

This process has been such a learning curve for me. I joke that I used to be a nice person before I became a mom. Every mom has to learn how to fight for her child, but throw in special needs, surgeries, appointments, and you become a gladiator. Thankfully, I have a husband and parents who are willing to battle right alongside me. I was talking to a wise lady last week about advocating for your child. I said it's a fine line. You want to be Christ-like but you also have to be aggressive. She said to me, "Katie, how many battles has He fought for you? Remember, this is the same God who sent locusts and turned people into pillars of salt." Hey, that's right, and I believe Jesus did flip tables and whooped some people too. Well, y'all will be proud to know I didn't flip anyone's desk over on them or whoop them either. After a few mild confrontations and a month later, we finally have the correct helmet. This is only our third full day and we have 10 days to work up to wearing it for 23 hours a day. I was prepared for crying and fussing but I'm happy to report that so far, this time, the helmet-wearing has been pretty uneventful. Would you please pray that Caroline will continue to amaze with her great ability to adapt? Even though she is trying to adjust to this new contraption on her little head, she is choosing joy. She is still smiling, laughing, and playing. She reminds me that this setback doesn't have to rule our lives. It is so easy to let discouragement work its way into your heart, but we are confident that God can use this setback for our good. I will never understand why but I know He is good and He is able to do immeasurably more than we could ever imagine. I am hopeful that years from now, we will be able to look back on these helmet days and realize her complete healing came only from Him. 

The amazing Caroline rockin' the new accessory. She's our super hero. 

The Great Swap

Happy October! My, it's been too long, but the past few weeks have been a little crazy around here. Caroline has so much to share with you, but for today, a little explanation of where we have been.

For the past 2 weeks, we have been experiencing the joys of packing all of our junk into boxes only to transport said junk 2 miles to unpack and find new places to stash the junk. I don't particularly care for moving but we did it so many times growing up that it would feel unusual for me to settle somewhere for too long. Josh, on the other hand, is not a mover. Until leaving home for grad school, he had lived in the same house for 20 years. 20 years! I cannot wrap my nomadic brain around that. Anyway, what makes this move extra "fun" is the fact that we are moving 2 houses at once. As we say around these parts, "Now do what?" Let me start at the beginning. So, last summer, we "swapped" houses with my brother and sister-in-law. Yes, we swapped houses. With family. My husband, being the gem that he is, thought it was crazy but he went along with it because well, he's just wonderful like that. Now fast forward 14 months to a typical Tuesday evening. Josh enters the kitchen after a long day at work. I say probably a bit too excitedly, "Hey! How was your day?" You know when you are anxious to say something so you try to act "normal" and it comes across as anything but "normal?" Yeah that was me. Josh just looks at me and says "it was ok…" Before he can say anything else I blurt, "so what do you think about swapping houses again?" He looks at me, sighs because he knows me, and says, "whatever you want to do darlin.' My home is wherever you and Punky are." Aww, didn't I tell you he was a gem? So why did we swap houses…twice? Well, I have wracked my brain and the only explanation I can come up with is that we are crazy. You know that saying, "the grass is greener on the other side?" Well that all depends on who is watering it.

So here we are, back in our old home. The good thing about moving back into a place you have lived before is you kind of already know where to put all of your junk. Now, the best part about moving is my mom is a pro at packing and unpacking. She and my dad have moved about 30 times over the course of their 37-year marriage. Wednesday, my dad and I took Caroline to her check-up and my mom was able to get her room all set-up, including organizing and labeling drawers and baskets. Oh and in her spare time managed to do 5 loads of laundry and rearrange furniture. She is probably the hardest-working and most efficient lady you would ever meet. She is always rearranging furniture- and my mom is a petite lady. We all marvel at her super-human strength when it comes to decorating. Once when asked how she did it, she shrugged and said, "I guess because I wanted to."

Here is a glimpse of Caroline's room… more (and hopefully better) pictures to come.

See the tags on the drawers? A hint to me to not just impatiently shove clothes haphazardly into them. The painting is an original Beth Whitlow, affectionately known around here as "Aunt Cookie." 

The organization of it all just makes my heart skip a beat. Seeing it took me back to being young and living at home. When my room just got totally out of control messy, my mom would spend a day cleaning and organizing every single thing. I mean there would be a tiny box in a cleaned-out junk drawer for the sole purpose of holding bobby pins. I would come home from school and be so happy and excited for a clean, organized room. So I love organization but not so much the work that goes into organizing. I am thankful for a mom who loves to organize and shows her love with her actions. She loves her kids and loves to help in anyway she can- particularly if it means she gets to organize and decorate.

Even though the past few weeks have been crazy and stressful, I am really lucky to have these wonderful people in my life who love me and embrace the craziness. My husband, parents, brothers, sisters, they are all on board this crazy ride and they make it bearable.