In true Carroll family fashion we jam packed our schedule this week with medical appointments and fun!
As I have admitted several times before, I am a recovering control freak. Against my will, I have really had to let go of those urges to control every detail of life and learn to go with the flow. The special needs momma life doesn’t allow me to share emotions with anything other than my kids. But I still get a thrill from establishing routines and successfully implementing them!
Mondays have become a routine acceptable day with work in the morning, physical therapy sessions for each boy around lunchtime followed by a trip to the grocery store. But the highlight of my Monday is having a “lunch break”. Special needs mommas (well, mommas in general) don’t get the luxury of established mealtimes. I usually get to town for therapies with 8 minutes to spare and if the line is short enough I run through the Chick-Fil-A drive through. And then I sit for a glorious three minutes and eat chicken in the parking lot at therapy. It is a little odd that parking lot chicken brings me so much joy. It actually has nothing to do with the chicken and more to do with the success of being able to eat at a normal and acceptable time.
Tuesday we met up with Malachi’s High School Robotics team to watch them demo the competition robot they built. Malachi loved listening to the robot as it sounds very much like his Wild Raptor ride that the team adapted for him.
Speaking of the Wild Raptor, the weather finally cleared up enough for us to start taking it outside! Malachi loved the independence it gave him to go way ahead of momma on our walk.
Then tonight we took it to a friends house so he could show off his moves.
While Malachi is not currently sick, he is still recovering from last weekend’s junk. When he gets something like a common cold it can mess with him for several weeks before he gets completely back to normal, which is why we are extra cautious about germs. Nighttime is hard for him as laying down makes it hard for him to breathe. I have been propping him up in the bed next to me but he is still waking up 8-10 times per night panicky because he can’t catch his breath. He signs to me that he is sad/scared and I hold him until he calms back down. It has been a long and sleepless week for Malachi. His seizures are also very intense each morning as he works to process the congestion that settled in overnight.
At feeding therapy this week he signed NO to everything that we offered him. He even declined chocolate, which is very unlike him. The only thing he signed YES to was blue juice- he loves to drink it because it turns his tongue blue which he finds hilarious!
We are still working on weaning one his seizure medications and one of the improvements we have seen is his eyesight. Malachi has Corticol Visual Impairment meaning his brain is what is causing him to be blind- not a structure issue. The more we reduce his seizure meds the more that fog lifts from him. After his horse therapy session on Wednesday I got on the highway and Malachi jumped in his car seat when we passed a semi. He usually can’t see those in his peripheral so that is huge!
Levi is still wanting to be attached to me 24/7 which is making therapy sessions difficult. He doesn’t want to work with any other adult, especially if it means he can’t be in my arms.
We had a small victory tonight when he contentedly sat with a friend from church! Baby steps.
Levi had a developmental evaluation done on Friday to see where he is at with his milestones. We don’t have the results quite yet but even this week we are seeing some new things. He is starting to pull up on things and stand for brief periods of time. I took this video to share our success with you:
We also resumed our feeding backpack training sessions this week with a cool new Spiderman feeding backpack. I just put the feeding pump and bag inside and it toppled him like a turtle each time he tried to move with it on. We will keep trying though!
This week Levi has some big appointments with the eye doctor to talk about eye surgery and the pulmonologist to get sleep study results and schedule throat scope in Cincinnati. Malachi will also have some modifications done to his wheelchair, and of course lots and lots of therapies.
We also had lots of play time this week. Levi braved the swing with Malachi for the first time ever.
We also did some sensory play with spaghetti, and he threw it all over Malachi. We were still finding chunks of it on Malachi’s head and outfit an hour later.
Saturday was a beautiful day so we went to the soccer fields to watch my 6 year old niece play. Malachi practiced his cheers from home, shouting “GO”. This sounds a little crazy, but it was the first time Levi sat on grass. He went into sensory overload and didn’t enjoy it but maybe it will get better over time.
A few weeks ago I started following a family that had two children with trachs and extensive medical needs. I believe firmly that every special needs momma needs a network, and this momma’s story touched my heart. They recently lost one of the two boys and were selling shirts to fundraise for an adoption. I ordered one for Jake, Malachi, and I and this week the package came in the mail.
Jake came in from work and picked up the package that I had not yet opened. He asked “What is this?” and I explained that they were the t-shirts I had ordered from this other family. He opened the shirts and read the front which reads:
“And if not, He is still good.” based on Daniel 3:18
As Jake read the shirt tears welled in his eyes. Those words mean so much to our sweet little family. And what a testimony they are to the faith of this other family that lost their warrior.
Our life thus far has been a “If not” scenario. We have prayed, begged, pleaded, and bargained for miracles from God for our boys. We have struggled to breathe through our sobbing, shaking uncontrollably from head to toe with uncertainty. We have dirtied our knees praying on the floors of hospitals for miraculous healings that never came. We have lived the “If not”. Every day that I wake up to Malachi having yet another seizure is an “If not” day. Every squeak from Levi’s little throat when he is upset reminds me that he is still an “If not” kid.
God has not yet healed my boys.
The “If nots” look different for each and every one of us. They are the things in our lives that we have asked God to change or remove but they still remain. They are the huge requests that continue to go unanswered to our human eyes.
I don’t know why God hasn’t healed my sons yet. And while I still firmly know and believe that He can, we are still in the “If not” phase of life.
The “If nots” are what make or break your faith in God. Those are the moments that you make a choice to continue to stand firm in your faith or allow the disappointments to shatter that faith.
But as these beautiful shirts remind me: “And if not, He is still good.”
God’s goodness isn’t based on whether we get the things we think we deserve from him. We must trust that God’s plans for us are bigger and greater than our own.
We must believe and trust that there is unimaginable purpose in the “If nots” of our lives.
And even when the “If nots” make us weak in the knees and take our breath away, our faith in God’s plans must be strong enough to shout to the world that He is still good.
So tomorrow morning I will most likely wake up to Malachi having another large seizure…a blatant and physical “If not” moment that reminds me that his brain has not yet been made whole by God. So tonight I will ask God for the grace and strength to honestly proclaim that He is still good.
I want to challenge you to speak those same prayers to Him over your “If not” moments this week.
And please say a prayer for our big appointments this week. Scheduling surgeries is always hard on my heart. I know the surgeries are coming, but when they are given a specific date and space on the calendar it even harder to process.