My, what a busy week we had last week! Malachi loves to go on “adventures” as we call them, and has been so tolerant of our busy schedule. It is so sweet to watch his face in the rear-view mirror as he tries to figure out where we are headed.

Monday was one of Malachi’s best sessions on his horse. We found some battery powered fans online and clipped on to the horse’s saddle- it worked better than we expected and the temperature change definitely helped motivate him a bit more than normal. He was verbally commanding the horse to walk and held his head up beautifully most of the session.

Our soccer season has picked up as well. For anyone new to the blog, Jake and I coach the girl’s soccer team at the high school. We take Malachi to every game and set him up with either his grandma or in his wheelchair with his DVD player. He stays close to the bench where we are just in case he has a seizure and he really enjoys the excitement…especially when daddy yells at the refs haha. This week was exceptionally cute as Malachi was trying his hardest to mimic Jake’s commands as loud as he could. Soccer has always been a passion of mine and coaching is something from my “former life”. Being able to continue with Malachi in tow has been refreshing. Here are a few pics one of the photographer moms took.

 

Soccer has had us on the road at least two evenings per week, typically about an hour away. We have been hoping that the rise in activities would wear Malachi out but unfortunately it has only seemed to somehow worsen his sleeping habits!

Tuesday we headed to town for Malachi’s weekly music class. While Malachi has been throwing up a lot less frequently, it seems that every Tuesday on the way to music we are having to pull over several times for close calls in the van. Vomiting in the car seat ranks up on my top 5 most miserable Malachi messes…too many crevices! So if we can safely get over the the side of the road we do our best.

It was also an odd day as I met with a lawyer concerning Malachi. Now that we are getting a grasp on this crazy life we have to start making certain that we have things in place for our sweet boy if something were to happen to Jake and I. While typical families can probably think of one or two couples immediately that could be listed as guardians, Jake and I have a little bit more of a struggle on our hands. There are plenty of people that come to mind that would be loving and wonderful parents…but they also have families of their own and we find it very difficult to ask them to bear such a burden- and please understand that I hate to use that word in reference to Malachi. We gladly have accepted Malachi and his many needs, but asking someone else to alter their lives so significantly is something we hesitate to do. We have a lot to think and pray about concerning Malachi’s future.

Wednesday was therapy and church day, and then came Thursday…stander day. You my remember that a few months ago we started the process to get Malachi fitted for a stander- a device that helps his body feel the sensation of weight bearing. If you aren’t familiar with them, they very closely resemble a torture device as he gets strapped in and propped up, but it will help with his muscles and posture.

We headed to Chattanooga to pick up the stander and had to take about 45 minutes to get him fitted in it for the first time. Malachi started out in a good mood but it quickly transitioned into a sad one…then he grew just plain angry! By the end he was a mess of tears, crying as if he was in pain. It was a cry we have not heard in quite some time and made my warrior momma mode kick in. I wanted them to hurry up just as much as Malachi! The kicker for me was that Malachi was trying to communicate his dislike by frowning, which I typically respond immediately to as we are trying to teach him how to communicate his likes/dislikes with us. It was hard to ignore the teachable moment and see his pain level continue to rise and not alleviate it.

Oh boy has Malachi mastered his “sad” face. He has been cracking us up all week with his deliberate frowns, so I made sure to catch it on camera for you. This transition shows his happy face, then his forced sad face, and back to happy by the end (over the course of 15 seconds). YAY for communication!

 We will be slowly introducing the stander as much as Malachi’s pain level will tolerate. When your body isn’t used to standing, or even putting weight on your legs it can be a shock to the system.

Friday was “catch-up” day and we ran all over town knocking off things from my every growing to do list. For quick trips into places like the post office, I strap Malachi to my belly in his toddler carrier. It looks ridiculous to have a 40 pound child strapped to my belly but is so much faster than unloading the wheelchair!

In addition to being soccer coaches, we are also youth pastors and will periodically choose a kid to take out to dinner in an attempt to connect with them a bit more. Our schedule was wide open Friday for dinner so we picked up one of our middle school kids and headed to a local restaurant for some catfish. We had a nice meal, but the highlight of the evening was when it came time for the bill to be paid. The waitress came by to let us know that someone had picked up the tab and simply passed the message along: “God bless you.”

As I have mentioned before, this type of kindness is shown to our family periodically, and each time it is simply humbling. In fact, this was the second time this week that someone had picked up our ticket anonymously (the two times we went out!) But the exciting part for me was to see the look on our teenagers face as he realized the kindness he had witnessed. He looked as touched as we did as he tried to wrap his head around the idea. It was a wonderful teachable moment in which we were able to explain the ways that God provides, whether financially or simply encouragement. We also explained the challenge Jake and I feel when this happens to “pass it on” and  when we monetarily cannot do the same act, to look for ways to bless others with what we do have access to. It was a great moment.

And I have been so challenged this week to daily lift up those kind strangers; I pray that the blessings they have given to my family would be returned to them in powerful ways.

So just another busy and wild week for the Carrolls. I have to admit that I have struggled tremendously this week in several ways. First of all, the talks I had with the lawyers about the “what ifs” saddened me deeply. It is so hard to think about what would happen to Malachi if I were gone. I found myself having to take my thoughts captive and give that worry up to God, trusting full well that He would provide care for Malachi if it was needed.

But the biggest struggle this week has been physically and emotionally. Malachi has been sleeping 4-5 hours a night, broken up into 2-3 chunks. So at most he sleeps for 2 hours then stays up for two more, then repeats the process until the sun comes up. As I looked in the mirror this morning I noticed some mascara under my eyes and spent time with a towel trying to rub the dark makeup off. It was only then that I realized that that wasn’t mascara- it was dark bags under my eyes.

I look at my hair growing silver and my swollen knuckles- already feeling daily pain from trying to hold tightly to a wild Malachi. I see my big ol’ belly protruding out- a mix of lack of exercise and poor nutrition. Some days I don’t have time to eat while other days are so busy and on the road the only option is fast food. I am also reminded of the way my belly was cut entirely through my muscles to get out my baby who wasn’t breathing. I am fueled by caffeine, and since I can’t stand the taste of coffee, my source for caffeine falls to Coca Cola (leading to an even bigger belly).  My eyelids are always heavy with sleep and my back continuously aches from Malachi’s care. This week my hips were painfully sore as I had walked a mile with him strapped to me so he could see the horses down the road. Facebook kindly sent me this “reminder photo” this week- this was taken right before I found out I was pregnant with Malachi!

When I look in the mirror I see this shell of a woman I used to be. One who exercised regularly, ate organic foods, drank only water. One who could do nightly devotions and not fall asleep during prayers. One who was determined to be a super mom and have four strapping boys.

Proverbs 16:9 “In their hearts humans plan their course, but the LORD establishes their steps.”

So as I stare in that mirror I have to remind myself that I am in the midst of a very special calling from God- I have been called to be the caregiver, mother, and cheerleader for one of God’s very special creations. This life is no longer about me. It is so much greater as daily I am given the chance to witness unconditional love and living a life for someone other than myself. Oh, how I have been humbled beyond measure. The Lord has established my steps.

And finally, I thought you might enjoy seeing a video of Malachi’s story time with his daddy:

God bless,

Jake, Leah, and Malachi