We were blessed this week with some wacky weather leaving Jake with a two day work week! We loved spending the extra time together as a family, running errands and enjoying using some gift cards from Christmas on some nice meals out in between errands. We love having dad around!

Levi is still very cautious about what he will try and we are just as cautious about what we will give him. Imagine our surprise when he stole an onion off of my salad and sucked on it for 5 whole minutes. Goofball.

This week we will go back to the eye doctor for a checkup. Historically I leave these appointments very discouraged but I am praying that this one will end differently.

Malachi got to go back to school one day this week and had a really great day! He also got a sharp looking haircut.

Malachi had his weekly horseback therapy session and he really enjoyed that his dad was there to watch him. He worked extra hard, clearly showing off for dad. Levi not only sat on the horse but also let it walk about 30 feet with him sitting with the therapist! With his new cerebral palsy diagnosis it would be really good for his core muscles if we were able to get him into some hippotherapy sessions as well.

Both boys are continuing to make progress in feeding therapy. Malachi likes to pretend that everything he eats is bugs or snakes and gladly attempts anything you give him. Levi is a bit pickier and tends to throw most of his food on the floor in protest.

There is a phrase “If you want to know how to treat someone with a disability just look at their sibling.” Levi has been showering Malachi with so much love lately, frequently holding his hand and giving him hugs and kisses. Whenever he gets scared, like during an intense movie scene, he clings to Malachi for safety. It really does touch my heart so much.

Both boys are dealing with a slight postnasal drip in their throats. For Levi this causes vomiting. For Malachi it causes junky breathing. His seizures and sparking back up due to the discomfort and his body temperature is also starting to fluctuate. Last night he went from 99.7 down to 96.1 in an hour. We finally have him back to a happy 98.6 but we are watching him very closely as it tends to change quickly.

When they are uncomfortable like this sleep is rare. And I am usually too anxious to sleep well when they finally crash for the night. We are in desperate need of a solid night of sleep!

We had a particularly rough night on Monday evening and Jake had to be up early on Tuesday to get to work. On those nights I take care of both boys and they tend to work on opposite schedules. Malachi stays up until midnight and wakes up for the day at 6am. Levi this week has been waking up at 2am and falling back asleep minutes before Malachi wakes up for the day.

Needless to say I was super cranky on Tuesday morning to the point where I was in tears. Yes, I realize how ridiculous this sounds but sleep has been scarce for 7 years and catches up with me every now and then. As I was ranting about being up so early I remembered the story about Jesus sleeping on the boat during a storm. I yelled to the boys “Even Jesus Christ needed sleep!!!” They just looked at me like I was crazy and I went back to my pity party.

But later I looked up that story, sure that if God laid in on my mind and heart there was something in there that He needed me to read.

Matthew 8:23-26 “When He got into the boat, His disciples followed Him. And behold there was a great storm on the sea, so that the boat was being covered with the waves; but Jesus Himself was asleep. And they came to Him saying, ‘Save us Lord; we are perishing!’ He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Yes, in these verses we get a beautiful reminder of the humanity of Jesus. His physical needs like sleep and hunger still had to be met, even though He was fully God.

But it is the storm that caught my eye.

The Bible is very descriptive of this storm in telling us that the boat was being covered by the waves. In the other gospels we read that the boat was already filling up with water and they began to be in danger. And as you would expect, panic began to settle over the men.

Oh how many times I have felt like I have been on that very boat. I am sure you have been on a similar one at one point in your life. You look around and all you can see is the daunting and dark waves slapping you in the face. The boat, the place you are supposed to feel safe and secure (especially with Jesus on it) is now a shaky foundation and you start to doubt if you will survive the storm.

I had my boat moment this week as I looked at the facts…there is no way that I would be able to function as a medical mama on just 2-4 hours of sleep each night. The stressors of each day slapping me over and over again the in face and with them bringing dangerous doubt.

And oh how I relate with the disciples as they race over to Jesus, shocked to find him sleeping calmly through this storm. How many times do we convince ourselves that our distress isn’t seen in our storms? Or ignored by God as the waves keep growing. Our tone tends to waver between fear and anger that He hasn’t intervened already.

But read Christ’s response: “He said to them, ‘Why are you afraid, you men of little faith?’ Then He got up and rebuked the winds and the sea, and it became perfectly calm.”

Oh man, did I feel conviction after reading that part.

I like to justify my fear by thinking it is rational, logical, and deserved. But when you are a child of God, that fear indicates a malnourished faith life. When we allow logic to trump our faith in God’s plan and power we show a lack of faith in Him.

So what should we do when we face those waves?

Treat them the way Christ did. Rebuke them in the name of Jesus and watch as even the storms in our life obey Him.

So this week I am going to work on replacing my panicky heart with a faith filled one. If God has called me to this motherhood role then He will certainly equip me with the energy needed to fulfill it in a God honoring way. I am praying this week that God sees fit to calm the storms in our world. And if not, I pray that He gives me a portion of His strength to be able to rebuke that storm and sleep right through it.

This week let’s remind ourselves to not fear the waves but to embrace the opportunity to allow them to strengthen our faith.

Much love,

Leah

 

 

 

 

 

 

 

It’s tummy tube awareness week so I thought we would start with some facts about my tubies.

Levi has been proudly sporting his g-tube for almost exactly 2 years. During that time we have had a handful of emergencies but overall it has just become a part of our routine. He gets 4-5 feeds of high calorie formula during the daytime and runs all night at a low rate. We have a daily calorie goal we try to hit and adjust his schedule as needed to hit that mark.

He is fascinated with his tube so we have to keep it covered and tucked away out of his reach. We fill his bag for the day each morning so his backpack full of food and ice packs is usually too heavy to wear until around dinnertime.

Levi still loves to try to eat by mouth too but we don’t rely on that method for any calories toward the count. He still has to eat very small bites, and things like crumbled crackers in his mouth can make him vomit.

This week he has brought me a spoon from the silverware drawer and this tub of whipped cream from the fridge EVERY morning. The boy knows what he wants.

Side not here…Levi is a toddler tornado. If I turn my back for a minute I find him on the table, climbing the toy shelves, or doing something else semi-dangerous but slightly impressive. He has started carrying his toy drum around the house to use as a step stool to reach all the higher up things that catch his eye.

And the emotional pendulum with this kid is pretty wild…

This is his bored with therapies face.

This is his “mom took my whipped cream away” face.

And this is his “mom finally caved and gave me one of her stickers (aka feminine hygeine products)” face. He was super pumped about this one.

Okay, back to tubie talk…

If Levi’s vocal cords start to function normally and can close to protect his airway we will be able to take his g-tube out permanently. If they never wake up he will have his tube for life. Just a waiting game at this point; the statistic is that 50% of kids with BVCP have their vocal cords spontaneously wake up by their 5th birthday.

Moving on to tubie boy #2!

Malachi has the same g-tube that Levi does but we use his differently. Levi’s gets pumped in over 15 minutes but for Malachi we squeeze in his feeds over 1-2 minutes. His tummy can handle the volume better. Malachi gets 4 big feeds a day and we give him a high calorie formula mixed with blended foods.

Malachi also likes to eat by mouth but really struggles and can get panicky. We don’t push foods with Malachi, but the boy can knock out some chocolate.

The tube became necessary for Malachi about a year and a half ago. While Levi was in the NICU Malachi lost 15 pounds in 5 months. The tube has allowed us keep him healthy and fed in the midst of our crazy day. It used to take Malachi about an hour to take a full bottle by mouth so the tube has been a true game changer.

Here is the handsome 7 year old in his Valentine’s Day outfit for school.

Yes, Malachi went back to school this week for a day! He was super excited and did great.

He got a few belated birthday cards in the mail and loved the surprise of each one.

On Thursday the boys and I packed up and headed to the hospital in Chattanooga to see Levi’s pulmonologist. I took the stethoscope and “checked” Levi and Malachi’s heartbeat at least a dozen times trying to prep him for the doctor doing it to him. He handled it slightly better than his normal reaction but still struggled with that doctor PTSD.

The appointment went well and we are now on an annual basis with his Chattanooga pulmonologist, and annual with his Cincinnati surgeons. He will go back this summer for another procedure in Cincinnati, and will have some minor testing done here in Tennessee in the meantime, but overall the appointment went decently.

Jake’s parents purchased us a family pass to the aquarium so I attempted a solo trip with the boys after the appointment. Malachi was giddy to go see the sharks. The lighting is low there and he is able to track and see the movement of the different creatures. His joy is so contagious!

Levi was a terrified mess when we first went in and clung tightly to Malachi’s hand for security. He was pretty anxious the whole trip but had a few slivers of joy in there.

If you have been reading for awhile you may remember a post I did about a year ago about a stranger offering to add a therapy pool onto our home for Malachi’s muscle tightness. Unfortunately we haven’t been able to get in touch with him after several messages, leading us to believe it isn’t going to happen the way we had hoped. We are obviously disappointed but believe that God sees things that we don’t.

With Levi’s new CP diagnosis and Malachi steadily growing bigger (more awkward to carry and much heavier to lift) we have decided if we are going to tackle the therapy tub route we need to make it happen soon. We were able to apply for a grant that will cover a large chunk of the unit and have been spending the last three weeks trying to sort out the details. In the long run we will be saving up our money to add a roof system over the top (like a picnic shelter open style) to keep the sun out of his eyes. We are so excited to be able to do this for the boys and just keep thinking about the joy and muscle comfort it will add to Malachi’s life.

The unit will go right off the front porch area so we can use the existing concrete for wheelchair access. It is just a few steps from our front door! More details to come when the ball gets rolling.  Here is a photo of Levi standing close to where the unit will sit.

On Valentine’s Day the kids and I snuggled on the couch and watched an old video of Malachi that my Facebook memories had popped up. He was 1 year old and had just been moved from the ICU to a regular hospital room due to influenza pneumonia. He looked pretty rough, but truthfully was feeling the best that he had been in nearly three weeks.

We watched the video once and Levi aggressively signed that he wanted to watch it again. I played it a second time and about half way through his bottom lip started to pout, then quiver. He studied the video so closely and when it ended he burst into tears. He ran to me for a hug, but seconds later pushed me away and ran to Malachi. He picked up Malachi’s head so gently and hugged it into his chest, crying uncontrollably while comforting Malachi. Seeing his tender heart made me start ugly crying, so proud that he has that level of empathy for others. Malachi was grinning from ear to ear, clearly loving the extra attention and hugs.

The way they love each other is so beautiful to me.

Valentine’s night I took all the single girls from our youth group out to dinner and Starbucks. Listening to them chattering from the driver’s seat of the bus took my back to a more simple time, where world’s like my current one weren’t even on the radar.

As we waited on our table at the restaurant I started to dig through my purse, something I haven’t carried for months and took me 20 minutes to find. I couldn’t help but laugh at the things I found inside:

-half of a fake eggplant from Levi’s kitchen set

-9 small bottles of hand sanitizer

-12 individually wrapped sanitizing wipes

-a diaper

-a Target receipt from June, apparently the last time I carried this purse

As I sat and mentally compared my purse contents from 2008 and 2020 it was a very eye-opening reminder of the wild ride God has put our family on. And I couldn’t help but see the change that this wild ride has had on my faith.

I never really understood what the Bible meant when it says in Mark 8 “And Jesus told them, ‘if anyone wants to come after Me, he must deny himself and take up his cross and follow me.’ ” I didn’t understand the metaphor of the cross, or what the cross really meant.

But as I read that verse now I see it all so much clearer. The cross was a symbol of pain, suffering, and death. For someone to willingly and gladly take it up on their shoulders and pursue Christ in spite of the pain seems so contrary to human instinct.

But each morning as my very tired feet hit the floor and carry my ever growing seven year old disabled son from the bed to the living room I can’t help but hear that verse and feel it deep within my soul. We are called to deny ourselves. Other translations use the phrase “you must give up your own way”.

Taking care of Malachi is so so difficult. But it is also such a blessing. It forces me to deny myself every hour, every single day. This life is no longer about me, my luxury, my sleep. It is about serving the way Christ would, and relying on God to give you the strength to serve in that way.

The crosses that we bear, the painful things in our lives, challenge us to focus our eyes on Christ instead of focusing on the weight of the burden.

Are you gladly carrying your cross, or are you allowing it to grow into a root of bitterness in your soul?

I don’t think it is possible to take up your cross if you haven’t denied yourself first. I pray that my pride never gets in the way of me hoisting that cross onto my back and pursuing Christ…over and over and over again.

God bless,

Leah

What a fun and full week we have had! The weather here in Tennessee went wild so we went from 70 degrees and flooding to several inches of snow. Our school system actually shut down due to the large amounts of absences due to sickness which meant Jake was home with us Wednesday through Friday.

We tackled all of our usual therapies and one trip to the hospital to meet with Malachi’s neurosurgeon. Thankfully these appointments are pretty boring as his shunt has been working beautifully from when it was placed seven years ago. During our recent ER visit they did a CT scan to check the shunt function and it was working well. These visits with neurosurgery are now annual which is a blessing.

Levi has some serious anxiety with any and all doctors. It also doesn’t help that his specialists all share the same floor of the hospital so all of the rooms look alike. There is a fire truck in the main waiting area for the kids to play on, which sets my spidey senses tingling when I think about all of the germs on that thing. I have even contemplated bringing gloves and sanitizing it myself one day while we wait, but then I imagine I would get some pretty odd looks. Or some legit high fives from some of the other medical mamas.

I have convinced Levi that it is super cool to wear medical gloves when he is at the hospital. He wears them for the majority of the time we are in there haha.

This week we will head back to the hospital for a visit with Levi’s pulmonologist. We will spend the days leading up to the appointment playing with the stethoscope at home, trying our best to prep his little anxious soul.

Malachi’s birthday was on Tuesday and unfortunately we had 6 appointments that day. But in between each one I did my very best to make it a special day for him. We went out for lunch with grandma, went to Target to pick out a toy with some birthday money, went to see the new Frozen movie with dad after work, ate chocolate cake, and opened up a few gifts at home. He was very aware and excited that it was his special day!

He has been able to wear the same birthday shirt for 3 years now! We are getting our money’s worth.

 

Malachi absolutely loved going to the movie theater and clung to the storyline. Levi, on the other hand hated every minute of it so he and I spent most of the movie running in the hallway.

Several months back I spotted a gift for Malachi that I knew he would love. It is a giant rubber chicken and when you squeeze him it screams for 45 seconds. Yes, you read that sentence correctly and yes we are crazy to buy such an obnoxious gift but he loves his big red chicken. He is even able to push it with his arm and get it to make noise all by himself!

Actually, we all love the big red chicken. There is something goofy and silly about stepping on him and hearing him squawk that brings a smile to all of our faces. I took a video for you, but be forewarned that it is an awful noise:

We also got a small trampoline for the play room that can hold the weight of Malachi and one of us.

His buddy at church gave him a new book about dinosaurs that makes noise.

And he loves playing with his new pet snake that he picked out at Target with his birthday money. He is such a particular little boy with big opinions about what he wants.

Levi has been a live wire this week, overjoyed to have Jake at home with us. He still has a slightly runny nose and whenever he has any postnasal drip he vomits frequently. Last night was the first night he made it without vomiting. This is always a bit stressful for us as aspiration is a concern.

He ate a non-toxic marker this week, so that was fun.

And he hijacked our friend’s ice cream cone. He was very proud of his accomplishment on that one.

We are trying to get him to wear his feeding backpack so we don’t have to chase him around with the bag. He is not a fan.

We have been working hard on manners, particularly saying please and thank you. I took a video of his progress for you to enjoy:

I have told you before about his tender heart toward other kids with special needs. There is another little girl at church who is a superhero like Malachi and Levi is smitten with her. He gets right up in her face to love on her and give her hugs and kisses. She isn’t always up for the invasion of personal space, but also seems a bit amused.

Yesterday we woke up to snow! We took the boys out for a few minutes to let them check it out.

As I watched the boys play in the snow I couldn’t help but take a deep breath and soak in the special life that God has placed us in. As the snow fell on the trees and covered them I felt like we were in our own little bubble, and it was such a safe and secure feeling. You never realize how valuable that security is until you go through a time of not having it.

Seven years ago Malachi was fighting hard for his life in the NICU. I don’t use those words flippantly.

Six years ago we were back in that same hospital in the PICU where we almost lost him again to influenza pneumonia.

Two years ago we were in the NICU in Cincinnati with Levi, caught in a cycle of hope, disappointment, and determination to keep trying.

Our lives with these boys have had so many moments of unpredictability and unknown. But as the snow fell on their smiling faces my heart felt such relief. That moment was a glimpse at the life I always dreamed about. It was a moment void of medical complexities, hospitals, and fear…just two boys and their dad playing in the snowy woods.

The truth is that we live a life of heartache. Yes, there are so many beautiful moments and so many positive things to focus on. But oh how there is so much heartache. The bad news hits us in the face while the good news is something we have to actively and desperately search for and create. It is not an easy world to navigate emotionally.

The Bible talks in Psalm about “A crown of beauty instead of ashes, oil of joy instead of mourning, a garment of praise instead of a spirit of despair.”

Seven years ago I was covered in the ashes as we watched Malachi fight for his life, helplessly sitting by his bed and praying that God would spare him. I don’t know that I can accurately describe the weight of the spirit of despair to you. I pray you never have to experience the heaviness of that load.

This was the first photo I ever shared of our sweet Malachi with the world. I was gripped with a reasonable fear that he wouldn’t live and I wanted him to be remembered for his strength, so I refused to post a photo of my very sick warrior.

We have sat in the ashes many times in our clumsy walk through parenthood. We have had to find contentment dwelling in the spirit of despair as we fight hard battles with our boys.

But over the last seven years I have caught glimpses of the crown of beauty, I have felt the hopeful and refreshing drops from the oil of joy, and I have touched the fabric of the garment of praise. We have yet to truly seize and take hold of these things that the Bible talks about, but oh how we have seen just enough of them to find hope in the journey.

And maybe we aren’t meant to grasp those things until we get to heaven.

God has unraveled the strings of our dreams and used them to create a beautiful tapestry that tells a much more beautiful story. We can’t see the final product yet, we can only watch as the needle moves, some of the stitches more painful than others. But His vision for our family is being fulfilled.

I wrote a poem for Malachi several years ago for his birthday and it spoke to me this year as I read it, reminding me that Malachi was created to be used by God and to bring glory to His name. I know I have posted this for the last several years, but it paints a beautiful picture that my heart needs to focus on each February.

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 beamed 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 angel 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 invention 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.

May God continue to use Malachi to do mighty things! And praise the Lord that He stays close to the brokenhearted, binding up our wounds.

Much love,

Leah

Superbowl Sunday always brings about an array of emotions for me. We were actually hosting a Superbowl party the night that Malachi was born. Today as I prepped to have the teens over for a party I couldn’t help but flashback to that night and the emotions surrounding it.

This week our miracle Malachi will turn 7. I will save my sappy post about him until next week, but I hope that over the past seven years that Malachi’s life has made an impact on your life in the same way has has impacted mine.

On Monday Malachi went to school and when I went to pick him up he seemed sad. The teacher told me that he was having an “off day” and wasn’t acting like himself. He didn’t have sick eyes, the first indication he is getting sick. And when we got to the car he perked right up.

At dinner I asked him if he had a good day at school and he signed “no”. I asked him if he had been happy or sad at school and he signed “sad”. I then asked him if someone had been mean to him and he signed “yes” and my momma radar went off! I asked if it was an adult or one of his teachers and he signed “no”. We continued the questions and answers until we narrowed it down to another student being mean and getting into trouble for it. He also signed that he did not want to go back to school the next day, which is very uncharacteristic of him.

I planned to talk with his teachers about the incident but later than evening I saw one of his teachers so I asked her if there had been an incident that day. She thought about it and said that yes, there had in fact been a scene caused by another student but it wasn’t directed at Malachi, but rather to the whole class.

Usually when kids get into trouble Malachi laughs, so I asked her if he had laughed and she said no. I think whatever happened in the classroom must have scared him pretty bad. But I was so incredibly proud of him that he was able to communicate so much to me and lead me to the problem! He didn’t get to go back to school for the rest of the week due to appointments but maybe our time away will have been a much needed reset button for him.

Malachi has been very vocal this week in his own ways. This was the result of me pausing the Lion King during one of the intense scenes to answer the phone at work. That’s some serious drama!!

Speaking of appointments, Levi’s big neurology appointment happened on Wednesday morning. To re-cap, Levi was born at 34 weeks via c-section and was squeaking and struggling to breathe. He was placed in the NICU and went through a series of tests and procedures to find out the cause of the squeak, eventually leading us to his diagnosis of bilateral vocal cord paralysis.

When we were doing all of those procedures to find out the cause we discovered a few small spots of damage in his brain and it was thought he had at least one even of oxygen deprivation severe enough to cause brain damage. We were quoted that he would have a 25% chance of having cerebral palsy.

We tucked that issue out of our minds as much as possible while we tackled the breathing issues. Once those were under control we met with a neurologist to discuss the damage and he requested that we get another MRI to see how much has changed since the previous scan. We had the scan done just a few weeks ago and needed to meet with the neuro to discuss the results.

We know the neuro well as he has been a big part of our seizure journey with Malachi. I knew that within two minutes he would unravel Levi’s results so I tried my best to not get too anxious and waited patiently through the opening questions.  He then pulled up an image of Levi’s brain and showed us that he now has 5 patchy areas of brain damage and his ventricles are slightly larger and misshapen due to scarring (areas of the brain that have died- they are the bright long lines on the outside edges of the black ventricles).

To help give you more of a visual, here is a side by side comparison of Levi’s brain on the left and a unaffected brain on the right. In this comparison you can really see the difference in the shapes of those black ventricle areas.

He said that based on the images of the damage, he is genuinely surprised to Levi functioning as well as he is. I guess that is a praise report hidden inside of a disappointing report! He said if he were to see this image and not know Levi he would be looking for a child that is much more physically affected.

Based on the MRI images and his clinical exam, Levi has been officially diagnosed with diplegic cerebral palsy. His CP is hypotonic meaning he is loose and floppy as opposed to his muscles pulling too tight (hypertonic). Big brother Malachi is a mixture of both hypo and hyper so we are familiar with both and truth be told we would much rather have Levi be hypotonic than too tight. Being too tight causes things to dislocate and lots of pain.

Levi’s main areas of his hypotonia are in his core, his legs, and his ankles. The only “treatment” is frequent therapies to help build up his weak muscles.

The neuro thinks that most of his brain damage is a result of his premature birth at 34 weeks as opposed to having several events where he didn’t get enough oxygen. Hearing that piece of the puzzle made me feel a bit better for some reason.

I left the appointment feeling glad to have some answers but sad they weren’t more encouraging results. He told me to continue to watch for seizure activity as it isn’t completely out of the realm of possibility for Levi.

Trying out brother’s chair just for fun

Levi’s diagnosis doesn’t really change anything for us. He will start being monitored several times a year in the cerebral palsy clinic and continue in his therapies. He will still struggle with balance and strength, but for now it doesn’t seem to be slowing him down.

To be completely honest, the temptation to wallow in grief has been on the forefront of my mind this week as I process our appointment. I keep thinking to myself, “Seriously ANOTHER CP diagnosis?!?!”

The devil has tried to take my mind towards the future for each son, which is a dangerous route to travel. Regardless of the longevity of life, each one of my boys will have more struggles to face, more physical pain, more doctors appointments. The inability to fix their brokenness sometimes sucks the breath right out of me.

When I start to mentally go to these dark places I have to open the Bible to refocus. One particular scripture kept coming up…”The Lord will fight for you; you need only to be still.”

To be raw and honest, I am tired of fighting. I am tired of trying to fix things on my own. I am exhausted by the pressure that I place on my shoulders regarding these boys.

Sometimes we forget that God is fighting our battles for us, and we only need to be still.

So as I sat in the car on the way home from the hospital that morning I tried to quiet my mind and be still in the presence of God. The battles aren’t mine to fight, they are His.

Later that evening I pulled up the scripture and read the context around it, something that is SO IMPORTANT to do when studying the Bible. Those words were spoken by Moses to the Israelites as they stared at the Red Sea in front of them and heard the chariots of the Egyptians barreling down behind them. They were panicking as they looked at their circumstances, feeling utterly hopeless.

When I read the story I noticed some things I hadn’t seen before…

God’s response to the Moses: “Why are you crying out to Me? Tell the sons of Israel to go forward.”

They were staring at a literal sea blocking their way. Panic had set in to their souls, and God’s simple response was “go forward”. And when they obeyed, it was THEN that God allowed the sea to part and for their feet to walk on dry land.

How many times do we find ourselves paralyzing ourselves in fear over a situation rather than stepping forward in faith?

As God continued to lay out His plan to Moses about the way he would part the Red Sea and lead the Israelites to safety, I noticed one more thing…

In Exodus 14:18 God says “Then the Egyptians will know that I am Lord.” As I read that this week I had this much needed reminder pop out at me.

Here God was performing a miracle that would lead His chosen people safely out of Egypt. But the miracles wasn’t for them. It wasn’t to re-affirm the Israelite’s faith in God, rather it was for the enemy looking in.

Sometimes God uses our situations, our trials, our circumstances to reach a group that might not be reached in any other way but by watching us turn to God in those moments.

Maybe the struggles my family continues to go through serve a much bigger purpose than only bringing the four of us closer to God. Sometimes we get caught up staring at the sea in our way. We forget that God sees a much broader picture and may be using that sea to allow an audience to catch up with us, so they too can watch the miracles unfold.

Please continue to pray for our family as we navigate this life. It requires a wisdom that we don’t possess, so pray with us that God continues to give us pieces of His infinite wisdom and peace.

Much love,

Leah