What an adventure filled week we have had! The first half of the week was packed with our regular stream of appointments and therapies, and honestly Malachi seemed happy to get back into that routine after our quiet and boring previous week.
Malachi is still very much a medically quirky kid and is still seen by several specialists for his various diagnoses. But the good news is that we seem to be on a “maintenance” route right now with almost all of them. There are no current emergent issues, but since potential issues still linger we are still seen every few months. We are thrilled that Malachi is at this point, and truthfully three years ago you couldn’t convince me that we would be on this path. God is so good!
While we rejoice over this fact, it also creates a recipe for annoyance with his maintenance appointments. This week we were scheduled to see Malachi’s neurosurgeon, a specialist we see every 6 months to monitor his hydrocephalus and VP shunt. The appointment was scheduled for 8:30, so that puts us up and moving at 6:30 so we can make the hour long drive. We park (a 15 minute process), register at the front desk (a 30 minute process), sign in at the specialist and wait (another 20 minute process). Malachi gets called back. They ask if there have been any changes, to which we reply no, then they push on his shunt to make sure it fills back up with cerebral spinal fluid, which it does. After three minutes in the room we are done and sent on our way with our next 6 month appointment card in hand. Right about that time Malachi is due for his seizure medications so we find a quiet chair and feed him a bottle with meds (a 30 minute process), then get back in the car and travel an hour home.
All for a three minute appointment.
As I sit and type this I almost feel guilty for complaining, as it could be much much worse. We really do need to count our blessings. The percentage rate for having a shunt this long without a malfunction (which requires emergency brain surgery) are pretty low so we truly are blessed. So bring on the three minute appointments!
Malachi did great in his therapy sessions, even hamming it up a little more than normal on account of dad being there due to spring break. It was so refreshing to have Jake join us on our busy days! You wouldn’t believe how much that boy loves his daddy.
We wanted to do something fun for this youth group at church so we hosted a bonfire at a local campground. Malachi absolutely loved the evening and all the sounds and smells it brought. He is a social kid and being around so many talking teenagers was exhilarating.
If you don’t know Jake and I personally, let me tell you a little bit about us. We love living in a quiet, calm community. Even driving to the next town over, which is a relatively small place, stresses us out. Y’all….people are CRAZY!! Traffic and crowds stress us out, so traveling to big cities in equivalent to a torture chamber. Prior to Malachi, our ideal vacations were to fly to Montana and rent a cabin in the woods. No city life for us Carrolls!
But as Jake’s spring break inched closer and closer on the calendar I decided that we should do something special for Malachi. Multi-day trips can get complicated as it requires lots of planning…which equipment pieces will Malachi need, how many meds to pack, soap and basin to wash the bottles, coolers for his food, etc.
I decided to keep it simple and found some fun things to do about 2 hours away in Atlanta. Then the true challenge began…convincing Jake it was a good idea to go near such a crazy busy place and call it a “vacation” haha!
We had it all figured out- we would plan our overnight trip for Thursday, planning all events around rush hour traffic. The adventure began and we sailed right through to our first destination just north of Atlanta. We checked into the hotel and immediately took Malachi down to the indoor pool- his first indoor pool experience. HE LOVED IT! We have never seen him so excited. The joy on his face was absolutely priceless and he was swimming and talking more than we have ever seen.
I want to share this video clip with you, and let me explain why it is so special. In this clip you will see Malachi decide to not swim towards mommy anymore but instead turn himself completely in the water to go after Jake. His neck ring gives him complete freedom to move and go where he likes, and seeing him be so independent is such a heartwarming thing. With his ring he can be just like any other 4 year old in the water.
After swim time we headed to Medieval Times! We are always trying to think of things that Malachi will enjoy, and we thought he would like to sword fights, trumpets, horses hooves, and jousting at Medieval Times. He did great through the show and didn’t get bored for the entire two hour event. Boredom is a new emotion he has been learning and he likes to be very vocal with a fake cry when he is bored. But two whole hours and not a peep. He would listen and anticipate each sword hit, jump at the sound, and then giggle at the fact that he got scared. It was a cute little cycle to watch.
The trip seemed to be going great- all three of us were stress free! Then the news reported that part of the main highway running through Atlanta had caught fire and collapsed. So one of the busiest roadways in the south was now shut down and we happened to be right in the middle of the mess. YIKES!
We decided to wait and see what traffic looked like the following morning before we made any changes to our itinerary. I was determined to go on phase two of the adventure, but that meant trying to get south of Atlanta on the same route hundreds of other drivers were trying to take. Was it worth the headache.
Yes. It. Was.
We decided to tackle the rest of our adventure head on and made our way 2 hours south of Atlanta to go on an animal safari! This place sounds unreal, but let me assure you- it is very real and very awesome.
Wild Animal Safari is in Pine Mountain, GA and is essentially a drive through zoo. You can take your own car (not recommended) or rent a beat up van to take through. We went the van rental part and just happened to get the most run down vehicle on the lot, which added to the adventure! We purchased several bags of food and off we went. Jake is a very safety conscious person and only felt comfortable taking Malachi if he was the one who got to hold him. I happily obliged and took the job of driver/photographer.
So the concept is pretty self explanatory- you drive through and the animals come running when they realize you have treats! We fed giraffes, zebras, elk, bison, ostriches, and so many more animals!
Malachi loved every minute of it and was so fascinated by the noises and smells that each of them would bring. They were just close enough for him to get a good look. We laughed so hard we cried at some of the crazy moments we had on that safari. By the end of it we were covered in slobber but one happy little family.
We took a scenic route back to TN, trying to completely avoid any Atlanta detours and all in all it was a wonderful 24 hour getaway! This was the first time that Malachi really “got into” a trip and seeing his excitement through each event made it a special time for all of us.
I have more stories to tell, but I am afraid I will put you all to sleep with such a long post! So I will save a few for next week.
The house project is still moving right along and it has been so much fun to see a mental picture take shape. The basement walls are up, and had it not rained we would have had a basement floor this week! Several weeks ago Jake and I had discussed how we want to make sure to pray blessings over the house. We are so incredibly blessed daily by God, and through this process we are reminded again and again of his provisions and unmerited favor.
Jake and I decided we wanted to build our home on the word of God- both literally and figuratively. For the last several weeks we have been trying to find the perfect verses that we could put under the foundations of each significant room in the house. Over the next few blogs I would like to share these verses with you, as they are reminders of the ways that God continues to remain active in our journey.
So today’s verse has been buried under the foundation of Malachi’s therapy room.
Philippians 1:6 “For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus.”
When we look at Malachi’s story, our minds are immediately drawn to all of the struggles and pain he has endured over the last four years. I get that lump in my throat when I think of all the surgeries, tears, and brokenness his body has had to overcome.
But this verse is a reminder to me that from day one, God began a good work in Malachi. And each and every minute of each and every day, little by little, God is perfecting His plan for Malachi’s life. God was never surprised by Malachi…because He created him EXACTLY the way he is, quirks and all.
While it is sometimes easy to get frustrated by lack of progress, or becoming burdened by thoughts about his unknown future, we just have to keep reminding ourselves that God loves Malachi even more than Jake and I can. He began a good work in Malachi, and we have to trust that He will continue to perfect it…even in ways we cannot see with our earthly eyes.
And even better yet, Malachi has a PERFECT body waiting for him in heaven.
Our God is a God of hope. He is a God of love, and goodness just flows out of Him. So while our journey can be so discouraging on levels others can’t comprehend, we find hope in Christ.
We find hope in remembering that our little Malachi was handcrafted by a very talented and creative God.
So as we continue to work in that therapy room for the rest of Malachi’s life, our prayer is that these words continually remind us that when our earthly hands fail at perfecting our son, we can trust that God’s great big hands are still very much hard at work.
Jake, Leah, and Malachi