This week we broke one of our big rules and took BOTH boys to Jake’s school. Schools are germ factories so we avoid them at all costs. Yes, Malachi does go to school but he stays quarantined in his classroom all day and only goes for limited chunks. When I told Malachi that we were going to go to “daddy’s school” I could see the wheels turning in his little brain, trying to figure out what I meant.
One of the business management classes at the high school had the challenge of creating a product to produce, market, and sell. They had the option to split the profits among themselves or donate them to a special cause, and as a class they voted to donate them to our boys. What a selfless and amazing thing!
Jake mentioned to me a few weeks ago that they wanted us to come in so they could present us with a check. I asked him if it was going to be a “big deal” and he said it was super casual and he thought it was simply a pizza party in the classroom.
Jake is not a “details” guy.
When Levi, Malachi, and I arrived we were taken to the stage in the cafeteria where news reporters were present, ready to capture the check presentation on camera. Members of the community had come out as well, including the gentleman who had organized Jake’s Angel Flight.
If you know me personally you will smile as you read this, knowing how awkward I get in the spotlight. During the all-eyes-on-me moments I overthink everything I do and this was no exception haha. Like when we filmed the Chick-Fil-A reunion last summer all I could think about through the meal was “What is the proper way to eat a waffle fry…one big bite, tear it into pieces…?” I am undeniably an overthinker. But beyond the awkwardness, it was such a wonderful sentiment for those young adults to make such a sacrificial decision.
Jake and I are continually blown away by the support we receive. People use the word “humbled” in situations like these, and that is by far the best adjective I can think of. Humbled and blessed.
This picture was taken right before my loving husband turned to me and nodded for me to give an impromptu speech. Thanks dear haha.
The rest of the week went relatively smoothly. Lots of fights with insurance, lots of phone calls, oxygen tank swaps, horseback therapy, pharmacy runs, and other mundane but busying tasks.
Malachi had a wonderful week at school. I love getting pictures throughout the day.
This week they will be going on a field trip to the aquarium! Malachi loves the independence school brings so Levi and I are going to drive him there (about an hour away) and let him walk around with his classmates without us. He is so excited!
This week I put him in a shirt that said “Big Bro Malachi”. When I read it to him and showed him the words on his shirt he was so proud. Every time someone would read it he would puff out his chest proudly.
I have been trying to sort out our schedule for the summer and what it is going to look like for both boys. I am not going to lie- it is going to be pretty intense and crazy. We have trips to Vanderbilt, trips to Cincinnati, specialist appointments, youth camp, and weekly therapies for both boys. It is overwhelming to think about.
But these boys are worth it. They lay on the play mat together every day after school and just stare at each other, smiling sweetly.
Other highlights from our week include play dates with friends and lots of time on the swing!
And of course, watching the sunset…that one never gets old.
Levi woke up this morning coughing so we have been on high alert making sure he isn’t getting sick. We are leaning towards it being allergies but are a little nervous either way. Every time he starts coughing it triggers his gag reflex and he vomits. We are very worried about aspiration as his vocal cords aren’t able to protect his airway as well as everyone else.
Please keep him in your prayers.
Nights have been exceptionally tough for me lately. We have been approved for nursing hours for Levi but can’t find a provider that will come out to our area. Last night I tallied how many times I got up with Levi and it was 15. And that was a night with just him. Jake takes Malachi duty on the weekends. When I have Malachi that number increases significantly and we get up for a few hours at 3:30 every morning, as dictated by his seizures.
Truthfully, I have been exasperated. I dread nighttime as the level of unpredictability overwhelms me. But one of those nights this week turned out to be an encouraging and special one between God and I.
I am sure other Christians can relate, but there are times that I just don’t feel connected to God. I am praying, reading my Bible, and the desire is there but I just don’t “encounter” Him. And when that happens I find that I truly miss our relationship!
I have been going through one of those times lately, and I have been asking God to reveal Himself to me. He has been speaking through me but not necessarily to me.
One of the more difficult parts about nighttime is that I can’t relax. I have to stay on my game and be ready to spring into action- whether that be racing across the house to get to Malachi as he has a large seizure, or racing to pick up Levi before he vomits and possibly aspirates it taking it into his lungs. There is no time for that groggy early morning reaction time.
It was 2:50am on Saturday morning and Levi woke up gagging…again. I knew a reflux vomit was coming and I reached for the blankets I keep stacked at the foot of the bed for this very purpose. Could I catch it in time to not have to turn on the lights for clean up? I paused his feeding pump and grabbed a syringe to vent his belly from any gas pains that might be causing his gags.
I jumped up from a dead sleep and squatted down to the ground for what felt like the hundredth time that day, my back clearly protesting. And it was in that moment that God chose to speak to me.
The words were very simple and concise. He said: “Just wash their feet.”
I don’t know if you have ever experienced God speaking to you, but it is such a special thing. As He spoke those words I processed them in my head and said the phrase over and over again as I finished cleaning Levi up and crawled back into bed a few minutes later. I knew that He was referencing the New Testament scripture about Jesus washing the disciples feet but was having a hard time connecting the dots in relation to my boys. I knew it wasn’t meant to be taken literally, but was a metaphor of sorts.
I knew that in the morning I would doubt that I had heard these words, so I opened up the notepad on my iphone to jot them down so I could study the story later. And as God frequently chooses to do, He intercepted my fingers on the keyboard and continued to speak very clearly to me.
“Just continue to wash their feet. Just continue to put their needs above your own, because that is denying yourself. That is joining me and taking up MY cross. That is loving the way that I loved. That is serving the way that I served. I have not called you to a life of comfort. Just continue to wash their feet through the sleepless nights, hospital stays, countless surgeries. Just simply continue to wash their feet.
This is the task you have been given by me. Am I not going to continue to give you the strength to continue in this life of service I have called you to?
Just continue to wash their feet. Because that honors your heavenly Father.
I am ‘the God who sees’ and my daughter, you are seen.”
I still get chills reading this. As I read the words He had spoken I was completely overcome with emotion and just laid in bed sobbing. I was reminded that this life I live is no accident. This was ordained by God and I was chosen for this.
John 13 tells the story about Jesus washing the disciples feet. And as I read the account, I was drawn to the last section:
12 When he had finished washing their feet, he put on his clothes and returned to his place. “Do you understand what I have done for you?” he asked them. 13 “You call me ‘Teacher’ and ‘Lord,’ and rightly so, for that is what I am. 14 Now that I, your Lord and Teacher, have washed your feet, you also should wash one another’s feet. 15 I have set you an example that you should do as I have done for you. 16 Very truly I tell you, no servant is greater than his master, nor is a messenger greater than the one who sent him. 17 Now that you know these things, you will be blessed if you do them.
It is so easy for us to fall into a trap of thinking we deserve things. We deserve to be recognized, we deserve to be catered to, or we deserve a break from the tough stuff of life. But what a revolutionary mindset Christ has presented to us through this story. Regardless of status, we are to serve. We are to deny ourselves and act out our love for one another by putting their needs above our own.
Jesus taught the disciples that day to go against their prideful nature and serve in love.
That moment with God refreshed me beyond what words can describe. And what blows me away is knowing that God is THAT accessible to me. My faith is mediocre. I am not an “exceptional Christian”. I am just like any of you, striving to live out a life of faith like we are called to do.
But I asked God to speak to me, and not only did He listen but He reached out to me with such clarity. He loves me THAT much…to remind me that He sees me and to encourage me to press on in this challenging life.
Have you had a God encounter? ASK FOR ONE! And then watch and wait because God has beautifully creative ways of speaking to us.
And as you can guess, those words have been playing in my head as a motto of sorts as I go throughout my days and nights. Just continue to wash their feet and serve and love them like Jesus would.
And that simple reminder has allowed me to wake up- yes, even 15 times a night- with a smile on my face, excited that I have the opportunity to show my sons what the love of God looks like.
My challenge to you all- whose feet is God calling you to wash? Who in your circles is undeserving, but needs to experience God’s love? Are you willing to serve like Christ and put your pride and status aside? Are you willing to metaphorically squat down and humble yourself to show God’s love to someone undeserving?
And may God encounter you this week!
9 thoughts on “Just Wash Their Feet”
Thank you for taking time to share your journey! I love reading your posts! Have a blessed week❤️.
That was beautiful, Leah. We serve a mighty, wonderful, loving God and I am blessed to know that you are looking to Him for He never fails us and is always there “just when we. need Him most”.
Your boys are darling and we keep your family in our prayers.
Leah you have challenged me in a way you can not imagine!
Praying and believing for for you to have a wonderful restful sleep as well!
On Sun, May 6, 2018, 10:59 PM Miracles For Malachi wrote:
> miraclesformalachi posted: “This week we broke one of our big rules and > took BOTH boys to Jake’s school. Schools are germ factories so we avoid > them at all costs. Yes, Malachi does go to school but he stays quarantined > in his classroom all day and only goes for limited chunks. When ” >
Hi, I have already commented on a post of yours once and I felt compelled to again as I still enjoy reading the blog. Though I have recently come to see it from a different perspective as I have found myself diagnosed with mild ataxic CP (while being a young adult studying Special ED). But otherwise, Malachi looks to have a very good grip on the glue (?) in the school picture with the seahorse. As I was rereading some older entries (after finding the cause of my lifelong clumsiness,…) I began to have a few questions about Malachi, specifically his therapy progress. Are you expecting him to learn to roll over with his better trunk control? If he ever has the leg surgery; can he use a gait trainer one day beneficially? And just out of curiosity, is he still taking the CBD hemp oil? Thanks in advance (and feel free to not answer for any reason). I will end by saying I look forward to continuing following the blog!
Whoops, I completely forgot to mention two boys with CP that I have also come to follow and I think are similar to your sons so I figured I would share if you aren’t familiar with the stories yet and would like to become: one is a blog called Eye can talk and another I saw featured on SBSK (Special books by special kids): John Paul, a preemie who also has airway issues(tracheal and laryngeal malacia) and chronic lung disease
Hello Sara! We always welcome questions about Malachi.
In the seahorse craft picture, I think the photo may have given an allusion that he can hold onto things and manipulate them accurately. While he can grasp things for brief periods of time, his ability and desire to do so is very limited. I would guess it was more of a “right place, right time” type photo 🙂 His CP does affect his fine motor skills significantly.
We have spent a lot of time in therapy with the rolling over concept but he has not yet mastered it. Since he engages his trunk control sporadically it is hard for us to reliably work with him on that skill and get the same results each time, if that makes sense.
As far as his legs, he is tricky. Even if we did put his hips back into place, there is not enough evidence of independent movement in his legs right now to assume that he would be able to use them. The chances of him being able to use a gait trainer are very slim, even with surgery as it seems his brain is not communicating to his legs for them to move. That played a large part in our decision to not do the surgery. If he were bending his knees or moving his feet independently then we would feel more confident, but his brain damage seems to have impacted his lower extremities greatly. That’s another reason why we always pray for his miracle 😉
He is not currently using the CBD oil, mainly for seizure medication reasons. We are told to be fully effective, it is best to wean off all anti-convulsants and replace them with the CBD. Since his epilepsy is intractable we don’t feel that it is safe or wise to make such a big move right now. But we did notice a change in his tone, awareness, and sleep habits when he was on just drops of the oil. His body started to adjust to the oil though so those exciting changes didn’t last more than a few months, and we were hesitant to increase the oil for fear it would counteract his other medications.
Hope all this helps!
Dear Leah, I love how our Father spoke to you so clearly and lovingly!! Thank you so much for your blog and for the challenge you ended with this week. It’s something I really needed to hear. Continuing to keep you all in prayer and sending you much love!! –Steph
God’s words are worth repeating for sure. Love the brotherly love shown on the pictures. They need and love one another. See you soon.