This week I am dusting off the hospital bags, but praising the Lord they have sat long enough to collect dust! We are creeping up on the 1 year anniversary of Malachi’s spinal surgeries and long hospitalization and I catch myself holding my breath that something dramatic might happen.

Over the next two weeks Malachi has some very big appointments. He has a CT scan scheduled to check his brain ventricles, as the shunt in his brain is still disconnected. He will also have a Urodynamic study done on his bladder and from there we will potentially be entering a new world for his kidneys with intermittent catheterizations. We also have several other routine appointments sprinkled into the mix and lots and lots of medical phone calls to get through.

The paperwork and phone calls often feel like a full time job, and finding a stretch of time that I can focus all of my energy on them.

Let me give you a few quick examples….

-I just mailed off our renewal for TennCare (secondary state insurance coverage) for the boys. We already know we make too much to qualify for this; aside from income if you have any asset over $2,000 you do not qualify, so owning a car alone immediately disqualifies us. But without secondary insurance our family will bankrupt very quickly. We have to fill out these application forms each year in order to get a denial which we can then use to apply for waiver programs to help offset costs. Levi qualifies for a waiver that allows up to $10,000 per year towards medical costs/therapies that insurance won’t cover. We use most of this to cover his Cincinnati surgery bills. And Malachi qualifies for a waiver program that comes with secondary insurance. But the only way to renew these waivers each year is to complete a TennCare renewal and get denied. This packet requires copies of each bank account statement, vehicle information, life insurance policy paperwork, paycheck stubs from the last 8 weeks, and all sorts of other private information that takes several hours to gather and submit.

-Vanderbilt has a policy in place that when a patient turns 13 the child’s parents lose access to their medical records in order to give the child privacy and control over their medical decisions. Even with a neurotypical child I think this policy is ludicrous. On Malachi’s birthday I lost access to his MyChart, the method in which I communicate with his doctors and appointment information. I spent a significant amount of time filling out paperwork, even doing virtual call with Vanderbilt after at least 6 phone calls. They called me Friday to let me know that the doctor didn’t sign the paperwork in time and my application has now been shredded. I can start all over again or I can drive the 6 hour round trip to get the paperwork signed in person.

-I am continuing to fight a $33,000 bill from Malachi’s surgery/stay last year. The hospital didn’t code it correctly when they sent it to our insurance so a portion of his $1.8 million stay was denied and is now “our responsibility”. This is a series of phone calls I make once every 4 weeks when the bill comes again and they threaten to send it to collections and impact our credit, when in fact it is an error in coding and our insurance should cover this in full.

-Managing approximately 20 prescriptions each month, incontinence supply orders, feeding tube supply orders for both boys, and equipment order for Malachi’s machines.

These are just a few examples of the things I am supposed to knock out in my “free time”. Usually days that I sit down to tackle phone calls leaves me in tears of frustration and keep me from the basic momma tasks that also demand my attention. Most days I feel like I am doing a sub-par job at each of the roles I am in, instead just focusing on surviving the next 24 hours.

Malachi has been enjoying life lately and is getting better and better at his communication switches. He chose a friend from school to be his voice on the recording machine and enjoys sounding like a teenager instead of mom. He is still rocking it at horse therapy each week and genuinely loves helping out with the soccer league and hearing the games.

We are enter the world of thicker mustaches, chin hair, and some super stinky armpits! But he still wraps his arms around me as I carry him to bed each night and gives me a big hug.

Levi is a bundle of energy and still keeps us laughing. He scored another goal in his soccer game and seems to be more focused this year. We actually are stepping out on a limb and signed him up for another local league when the one we run ends. There is a bit of anxiety, as he still struggles to breathe when he runs but we have talked to him about being his own advocate and learning how to talk to someone new and express his need for a break.

One of Levi’s classmates had a rock climbing birthday party this weekend and we RSVPd but assumed Levi would struggle with climbing. His cerebral palsy makes it hard for him to use his fingers to grab, as well as affecting his ankles and core. It was definitely hard for him, but he loved the challenge! Today he woke up and said his “heart and arms hurt”, which we were able to translate as his chest and arm muscles haha!

Mark 12:41-44 “Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. But a poor widow came and put in two very small copper coins, worth only a few cents. Calling his disciples to him, Jesus said ‘Truly I tell you, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything- all she had to live on.’ ”

A few weeks ago I started the Bible Recap plan again, working to read through the Bible a few chapters each day. Even though I did this same exact plan two years ago and have read the scriptures many times before I still am finding so many encouraging scriptures and convicting truths in the Word.

As I prepared for one of the kids league Bible studies last week I read this familiar story and spent time really studying it. We were discussing what “honoring God” truly looks like, and as I read this story I spotted such a beautiful reminder.

Out of her poverty

So many times I feel like I am too exhausted and overwhelmed to give time, energy, mental space, finances….and the list goes on and on.

It is rewarding and exciting to give from our surplus. But the sacrifice required to give out of our poverty comes at a cost. And counting that cost yet walking forward in faith with a pure heart set on honoring God…that is truly a hard thing to do.

These four words keep coming to mind each time I find myself struggling to give a little more of myself as a mother, a wife, a caregiver, an advocate, and the daughter of the King.

When we give out of our poverty without expectation of a return we are practicing a life of surrender and trust in God.

I am praying for a heart that doesn’t pause and consider the cost. I am praying for a heart that joyfully gives out of my poverty , knowing that God is the multiplier and can continue to do far more than we could ask or imagine (Ephesians 3:20).

Blessings,

Leah

Some weeks I sit down to type the blog and realize that I don’t have many life photos to share. But this week that is definitely NOT the case! We have had several big moments from over the last two weeks I am excited to share with you.

Last weekend our area had a winter storm, leaving some beautiful white snow to play in. This is one of those special needs parenting things that is very hard for me. Levi is capable of gearing up and playing the snow for several hours, but Malachi can’t handle the colder temperatures for long and his mobility is limited without the use of assistive devices. I want SO BADLY to give him the same experiences we give Levi, but the older he gets and the larger her gets safety becomes a factor.

Both boys woke up excited to see the snow and we did the absolute best we could to give Malachi a fun day in the snow. Levi and dad did some more intense sledding, but we just didn’t share that information with Malachi to avoid hurting his feelings. I put together a video of our adventure to share with you.

Snow in Tennessee makes life a little more complicated as it shuts things down for several days. The Saturday snow left Jake out of school until the following Friday! But we enjoyed the extra family time and fun.

Last week we kicked off the 5th year of our kid’s soccer league ministry. This year we have 130 players signed up, with 8 practices spread out over Mondays, Tuesdays, Thursdays each week and 8 games on Saturdays. It is absolutely exhausting, but such a beautiful opportunity to share Christ with the children.

We had the first game day yesterday and Levi scored a goal! Watching him run blesses me so much. He has come such a long way with his ankle/leg strength and his cerebral palsy. His breathing is still very loud when he plays, but it doesn’t stop him from giving his best. And Malachi LOVES to help coach. We left him on the court for the games with the non-violent littles and he had several balls bounce off his chair, much to his delight.

We try to find a creative way to present the gospel to the children each year, and this year I am trying a different route focused on Biblical truths versus lies of the world. Levi told me today “Mom, I am glad you are changing it up and not telling the same old stories about God.” I asked him to clarify and he said “You know…how Jesus was born, and died, and was raised from the dead….that same old story.” I am glad they are paying attention to the “same old story” haha! My prayer this year has been that we plant seeds of truth in their little hearts.

We had another monumental event this past week! Malachi turned 13 years old!

I can’t adequately explain how blessed I am to have Malachi as my son. He reflects so many Jesus qualities to the world! He has such a witty sense of humor and a contagious laugh. His smiles are authentic, so if you get one out of him you know it is very genuine. He feels big emotions and has been working so hard to communicate with others outside of his safety people. Malachi has to deal with many hard things, but he has the unique ability to see a rose amongst thorns and keep his eyes focused on the lovely things in life.

In an effort to continue to be transparent with you all, I struggled this year on Malachi’s birthday. My insides were a perfect example of grief and gratitude living side by side. The night Malachi was born our lives changed forever, and those memories and emotions create a physical reaction in my body as I flash back to hard conversations and near death experiences. I can remember each of them with such clarity, no matter how hard I try to forget.

I remember the moment his heart stopped beating inside of me.

I remember waking up from surgery and asking Jake if our son was alive. All he could do was nod yes and I knew not to ask more questions.

I remember a nurse coming in and letting me know he was not doing well. I still hadn’t been given the opportunity to meet him and was overwhelmed with grief that my son would pass away before I could even lay eyes on him.

I remember the first time I saw him- on the screen of a digital camera.

I remember the beeps. The smells. The victories. The losses. Each of them are like a scar on my heart, serving as reminders of one of my darkest days.

But it also carries the title of being one of the most amazing days of my life. Malachi made me a mother. He unlocked a world of love I had never known, and through him my faith grew clumsy, awkward legs and ran to the Father. Malachi’s birthday marks a new life for me. A life fully reliant on God, surrendering my son, my plans, my visions to God’s will.

I asked Malachi what he would like to take to school on his birthday and he decided on a popcorn bar for the entire school. We ordered some big bags and geared up for the fun day.

And when we got to school he suppressed all of his joy (like the teenager he is) and “played it cool” haha. I think he was annoyed that Jake and I stayed- we cramped his style.

After school we went bowling, opened some presents, and did a Crumbl cookie taste test (confetti cake cookie won Malachi’s vote). One of the presents we got him this year was several new communication switches. I know that sounds like a lame gift but they run $100-$300! And we have to order them without knowing if they are a good match for his abilities and just hope they work out.

We spent most of the evening playing with the location of the switches, trying them at his elbow, temple, chin, etc. We were finally able to settle on a good spot for 1 head switch and we have ordered an identical one for the other side. They plug into a 4 phrase recorder so we can give him access to activate 4 different words/phrases if we can figure out how to successfully get him using 4 different switches in 4 different places.

I took a video for you to see how he uses his new wobble switch.

This weekend we played Bible Guess Who and I would describe in detail the character he had picked (that the other team would try to guess)- what they were holding, wearing, looked like, etc. Malachi did amazing with his switch, answering YES when it was applicable. I was so amazed at how quickly he was answering Jake’s questions.

But even more amazing was Malachi guessing Jake’s character. At one point he had narrowed in down to 4 different characters- Noah, Moses, Judas Iscariot, and Joseph. Jake had guessed his character correctly so Malachi had one chance to make a guess. Jake graciously gave Malachi a hint, saying that his character was in the New Testament. Malachi IMMEDIATELY knew, clicking his switch for YES when Judas Iscariot was said in the list. Smart boy.

And yes, you may have noticed in that photo that we are not at our house. Part of Malachi’s birthday gift was a birthday adventure of staying the night in a covered wagon! Our sweet friends down the road at the farm let us stay the night in one of their wagons. We also said goodnight to the exotic animals in the barn before we settled in for the night.

We stayed up until midnight, eating pizza and playing board games. Malachi is incredibly competitive and had decided he wanted to beat dad in all the games. Before bed we cuddled up as a family and started a new book.

Both boys were excited about the adventure, but Levi was SO excited. He was wide-eyed when we walked in and turned to Malachi saying “Thank you Malachi for being born!”

What a gift Malachi is to the world.

To close tonight’s blog I would like to share a poem I wrote for Malachi when he was just a few years old as it reflects my momma heart.

It was a breathtaking day in heaven as the father summoned the Son.

He wanted to tell him firsthand about something wonderful he had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”

Jesus nodded as he understood the truth in God’s mysterious ways.
He smiled as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.

What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a masterpiece from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.

So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.

Blessings,

Leah