Rebuke the Waves

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!

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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.

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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.

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

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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.

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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.

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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.

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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

 

 

 

 

 

 

 

Tubies & Tubs

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.

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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.

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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.

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And the emotional pendulum with this kid is pretty wild…

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This is his bored with therapies face.

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

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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!

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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.

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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.

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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.

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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!

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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.

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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.

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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

Ashes

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.

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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.

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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.

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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.

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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!

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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.

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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!

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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.

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

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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.

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

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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.

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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.

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

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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.

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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.

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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

MRI Results

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.

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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!!

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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.

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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).

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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.

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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.

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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.

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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

 

Normal

After such a great week in Florida is was difficult transitioning back into Carroll land. We tackled 8 medical appointments this week and have 8 more this coming week! Life quickly went back to its normal level of chaos mixed with fun.

The boys had some trouble adjusting their sleep schedules back to our normal so we had several camp-outs in the living room. Our giant bean bag has been serving as a portable bed for Levi and I when Malachi falls asleep in the living room.

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Malachi and Levi are growing closer each day. Levi has started to answer for Malachi when I ask him questions, trying hard to help big brother. He insists on pushing Malachi in his chair and helping him do things, like color.

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But my heart fluttered this week with one tender moment. Malachi was listening to a Mickey Mouse cartoon and at the end of the show all of the characters dance to a song. I always try to help Malachi dance with them by moving his arms like the characters do, but I was in the kitchen when the song came on. I turned around and saw Levi run from the playroom and grab Malachi’s hands to do the dance moves with him. Malachi lit up with one of his famous smiles, and Levi smiled back so endearingly, knowing that what he was doing made Malachi happy.

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Levi already has such a special, tender spirit about him. It is so fun to watch that continue to develop in him.

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Malachi will turn 7 years old in just over a week. As I looked at him this week I couldn’t help but see all the physical changes he has gone through in the last year. Yes, he is still very small for his age but he looks like such a big boy. And his legs have grown so long!

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He hasn’t been healthy enough to go to school since before Thanksgiving, but our schedule allowed him to go two days this week. He was super excited to get to go back and see his friends and teachers, and when I picked him up the smile was still there.

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Jake turned 35 on Saturday so we celebrated with a special meal and bowling. Both Malachi and Levi really got into it this time around and Levi liked helping Malachi push the ball down the ramp.

Levi is going through a Mr. Independent phase and we continually find him doing dangerous things, clueless that they are dangerous. He has figured out how to scoot chairs around to reach every drawer and climb up on the kitchen table.

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We also are working on the idea of potty training, although I am admittedly clueless on how to accomplish this task. We bought a small potty to get him comfortable with the idea and he really likes sitting on it (fully clothed haha). It makes a flushing sound like a real toilet, which is his favorite part.

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The boys both had weigh ins at their GI appointments, Levi is at 23 pounds and Malachi is at 31. Levi is getting a significant amount of calories every day but doesn’t keep the weight on with his breathing struggles. This was one of the big arguments they presented when trying to get us to trach him. It doesn’t help that he is a very active toddler now too!

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On Wednesday we will meet with the neurologist to get the results of Levi’s MRI from December. Appointments like these are a little tough to swallow as there isn’t really any “good” news. The BEST news we could get is that his spots of brain damage haven’t gotten any bigger since the last scan…but even in that we have to acknowledge and discuss the brain damage that has already occurred.

Last time we met with the neurologist he said he felt confident we would find the damage more extensive and talked about an official cerebral palsy label based on the results.

In true Leah fashion I am prepping my heart for the worst possible news we could receive but strangely enough I feel such a peace. Not necessarily a peace that the outcome will be favorable, but rather a peace knowing that whatever the results are it doesn’t really change the story God has written out for Levi.

The world has created an idea of typical, normal, standard. Parents and doctors cling to milestone charts and growth charts and look for fixes when the child isn’t measuring up to what “normal” looks like. I admittedly followed these charts anxiously with Malachi, praying and believing that he would be healed and totally “normal”.

But as Malachi’s story has been unveiling over the last 7 years I have started to realize that the worth I was placing on normalcy was stealing my trust in God. Each day that I would hear another diagnosis that led us further away from normal the more frustrated I got that God hadn’t intervened.

I was trying to make Malachi’s story look like everyone else’s instead of finding contentment in the one God wrote and designed especially for him.

Jeremiah 29 says “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord.

There is so much freedom in acknowledging and respecting the omniscience (all knowing nature) of God.

Malachi and Levi each have such unique testimonies, but I choose to believe that it is because God intends to use each of them in a uniquely beautiful way.

Ahh I am doing that thing where I doze off after every sentence so I guess that is my cue to head to bed. Some weeks you all get the scraps of my energy and thoughts; maybe next week I will be more rested.

Please continue to pray over our family. Pray specifically for Malachi to not experience physical pain with his dislocated hips. The larger he gets the more they click around and the surgery that would be required is a terrible one. And please keep praying that Levi’s vocal cords wake up!

Much love,

Leah

 

 

 

 

 

A Whale of a Time

I am so happy to share with you that we had a wonderful family vacation, free from any medical emergencies or catastrophes! It was such a fun week, especially for our sweet Malachi. He looked forward to each new day and smiled or laughed most of his awake hours. Be prepared for a picture overload!

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On Monday we tackled Disney. Jake and I are not die hard Disney fans, so entering the chaos of that world with our boys was a pretty intense thing. Disney people are crazy. But the park is very accommodating for children like Malachi and I was impressed at how they went out of there way to make it doable for our family.

They have something called a Disability Access Service (DAS) pass that allows you to check-in at a ride and get a return time so you don’t have to physically wait in line. We used the down times to tube feed the boys or re-apply sunscreen to my very fair skinned children. If the lines were short instead of giving us a return time they would let us right on. They also allowed all of our group to go with us, so Malachi got to ride with his cousins!

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Malachi loved the sensations and movement in each ride and the suspense of what would come next set him in giggles.

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Levi wasn’t so sure about all the chaos. Several of the rides terrified him, others bored him and he would turn around and stare awkwardly at the people behind us, probably trying to figure out why they were following our every move.

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By the end of the day we were all exhausted and ready for bed. I snapped this picture of a very tired Malachi, something we rarely see.

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On Tuesday we went bowling with the family, played at the resort’s splash pad, and then went to the Rainforest Cafe for dinner. The weather was in the mid 80s the whole week!

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Wednesday the rest of the group went back to Disney and the four of us headed to Sea World. The park was surprisingly empty and we got Malachi as close as possible to each show so he could visibly spot the animals. The staff at Sea World was very sweet to Malachi, making sure to send the trained animals over into his line of vision so he could get a glimpse. My favorite photo set from our day was this one; the trainer sent a dolphin over to say hi to Malachi and when he spotted the dolphin he broke out in the sweetest smile.

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Being so close to the animals meant that we sat in several “splash zones” at the shows. The first one Jake sat in with Malachi was the orca show, and boy did they get splashed!

Jake is in the red shirt with Malachi on his lap.

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I took a video and have watched it at least 100 times. We warned Malachi that he might get splashed by a whale but we never imagined this; Jake and Malachi are in the lower right corner in the red shirt and ball cap:

Malachi was wild-eyed after and couldn’t stop laughing. He LOVED getting soaked and still laughs anytime we bring it back up. I interviewed him after to get his take on the experience:

He also got a chance to throw fish to the sea lions, watch the penguins play, and get up close to a walrus.

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They had a section within Sea World that had some rides for toddlers and we were able to walk right on with the boys.

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At the end of the day we asked Malachi which park he liked better, and while he liked them both he signed to us that he liked the rides at Disney a little better than the shows at Sea World. But it was a very close second place, so we are grateful we had the variety for him.

Malachi’s new wake up time is 6:30, which is a big blessing! On Thursday he and I were up so we went with the rest of the group to another resort down the road for a character breakfast. Our resort was not affiliated with Disney but this other one offered a meet and greet a few days a week. Malachi first met Pluto but without them talking he wasn’t very impressed. But he did seem the be able to see Goofy a bit better than Pluto and was excited to see him. With his legal blindness he has never really “seen” the characters on the show, he just knows their voices. So having one of them come by really means very little to him without a voice to place with it. But he did think it was silly.

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We spent the rest of the day swimming in the pools with his cousins, and it was one of the highlights of his week. He loves the independence swimming gives him. We floated in a lazy Miami that moved him without us helping, which was a real treat for him and his big boy independent spirit.

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Levi grew more and more brave as the day wore on. I took a video for you all:

That night we had dinner at a T-rex restaurant, which terrified Levi and mesmerized Malachi. At one point during one of the “storms” that they simulate Malachi started yelling like he was scared. I leaned over to check on him and said “Malachi, are you okay?” and he broke into giggles. He was using his imagination, like a dinosaur was chasing him. It is those moments that I get to see his sweet and silly 6 year old spirit that bring me so much joy.

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On Friday we packed up and made the trip home. We stopped off in Atlanta to visit with my brother Andrew and his family and we made it home a little after 10:00.

Yesterday we attempted to unpack but only managed to put away about half of our gear. We had to make a big grocery trip to restock the fridge and buy supplies to make dinner for the youth group tonight. We are back in the swing of things for sure.

We are adjusting back to the world of long pants and winter coats. And child proofing the house again.

I can’t put into words how wonderful it felt to have a successful family getaway. Seeing Malachi’s pure joy and watching Levi interact with the world outside of ours was a beautiful thing. Jake and I both discussed how we need to make a conscious effort to attempt to travel with them more often and give them adventures, even when it is incredibly difficult to do so.

The next several weeks are packed full of appointments; this week we have seven! Our outdoor soccer team will start practices three afternoons of the week, our indoor season is kicking off with games two nights a week, and we still have youth pastor responsibilities and jobs. The week off came at just the right time!

Jake and I had some really great conversations as we traveled to and from Florida. We talked a lot about God and the things He has been working on within each of us. We hold a lot of responsibilities and we spent time evaluating whether or not each of them produces fruit.

Now, if you are new to Christianity or the Bible that last sentence may have confused you. The Bible often refers to fruit, like these verses that Jesus spoke in the book of John.

“I am the true vine, and my Father is the gardener. He cuts off every branch in me that bears no fruit, while every branch that does bear fruit he prunes so that it will be even more fruitful…I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.” John 15:1-2,5

Fruits are things that grow from your faith. They are evidence that seeds are being planted by you and watered by God. Sometimes we can think we are doing something that is in line with the will of God, but when we look and evaluate we see that no fruit has grown. We only see empty, dry branches. Those are the ones we are called to allow God to cut out of our lives.

I also want to note that part in the verse that talks about the pruning. Oh, how I have been pruned, working in the will of God at something but experiencing the painful pruning process that allows me to bear even more fruit.

So how do you tell the difference between being pruned by God and Him removing the fruitless branch altogether?

I think the devil likes to work in our doubts. I think he has been actively working in the doubts of both Jake and myself. Are the things we are depleting our energy to do having a kingdom impact? Or are they fruitless endeavors?

After hours in the car of re-evaluating the things we are spending our time and efforts doing we decided to hand it over to God and spend time in prayer and His word. Those are sacred things that the devil can’t infiltrate.

The point of all this is to remind you all of the pruning process, as I myself needed a refresher course. Bearing fruit is a beautiful process, but will also sometimes be a painful one.

But the key to all of this if found in verse 5: “If you remain in me, and I in you, you will bear much fruit. Apart from me you can do nothing.”

Are we spending time abiding in Christ? Are you remaining in Christ?

If the fruit isn’t there, it is quite possibly it is because you are not even connected to the tree in that area of your life.

A verse has been playing on my mind this weekend as I am actively seeking God on several big things. The verse is from Ephesians 2:10 and it says “For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

As I keep stating that verse over and over I lock into the final words “which God prepared in advance for us to do.”

God has already prepared things for our lives that He knows will produce fruit. We have to stop trying to create those things and simply live a life of surrender, allowing Him to guide us to the things He has prepared for us.

I feel like I just wrote a bunch of nonsensical thoughts. In my head they make sense but I apologize if I lost you haha!

Please be in prayer over our family as we try to settle back into the vine. And pray that God helps prepare our hearts for some big appointments in the next two weeks with potentially hard to swallow outcomes.

Much love,

Leah

 

 

Orlando Week

We are officially in sunny Orlando, FL! We are looking forward to a week away from the hustle and bustle of our lives and spending time with family. We are here with Jake’s parents as well as his siblings and their families- 18 of us total.

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We made half of the drive on Saturday afternoon and the boys were so keyed up by the time we made it to the hotel that they stayed up until 2:30am. Malachi has been wildly excited to go on this “adventure” as we call it, and especially excited about seeing his cousins. We finished the drive this afternoon and we are all settled into a very nice condo that some very kind friends gifted to us for the week. Tomorrow we are going to attempt to go to Disney…I am sure I will have some fun stories about our adventures to share with you!

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Prepping for the trip was the stressful part as I had to try to gather all of the prescriptions we needed to get through the week. Little known fact: the first part of each new year the companies we order things through have to re-verify insurance which takes 3-5 days. Then the actual shipment takes another 3 business days to make it to us. And I can’t request the refill until about a week before we run out of the last batch. Boy, were we cutting it close to get all of the supplies here in time…Malachi’s diapers, formula and feeding supplies for both boys, seizure medications, CBD oil.

We found out Friday at 3:00 that we weren’t going to be able to get one of Malachi’s tummy meds here in time (apparently there is a national shortage) so we had to find a pharmacy with something that is close to his prescription. This is a recipe for disaster as his seizures are linked to his stomach. Just in case we brought extra emergency/rescue meds. I am praying we won’t have to use them.

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Malachi is healthy again but very weak from last week’s struggles. We attempted therapies this week and while he tried very hard he still grew exhausted quickly.

Levi also went to his therapies and managed to get a black eye during his physical therapy session. His balance and coordination is still pretty bad and he took a hard spill into the corner of the wooden balance beam. Ouch!

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While we were watching big brother Malachi at horse therapy I asked Levi if he wanted to get on the horse too. He typically replies with an adamant no, but on this day he said yes! After Malachi was done we plopped him up on there, which lasted about 6 seconds, but still a big step for our hesitant Levi.

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If you are a new reader, one of the many hats we wear in our small town is soccer coaches. Jake and I have coached the high school girls for the past 8 years and a 4 years ago we started a boys soccer team at the high school. I have come to terms with not being able to be out there as much with the kids, but this week the weather was pleasant so the boys and I were able to be out there for a bit. I took Malachi’s wild raptor so he could have fun riding while mommy and daddy were focused on the teens.

The boys also go to work with me at the church office on Mondays, Wednesdays, and Fridays and it is getting increasingly difficult to keep Levi from getting into trouble there. If I turn my eyes for a second he is on the phone, typing on the computer, or trying to grab and run with the papers the copier is spitting out. It is physically and mentally exhausting trying to keep up with him and get work done. But he is super cute pretending to talk on the phone.

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Levi has a very big imagination and it is highly entertaining to all of us to see what he will come up with next. Last night he found a pen and paper in the hotel room and walked around “writing things down”. I took a video for you:

As we inched closer and closer to leaving for our trip I caught myself several times allowing worry to take over. The what-ifs swirled in my mind when I closed my eyes at night. I mapped out the fastest route to the local children’s hospital, printed out up to date medical summaries on each boy, and tried to think through and prepare for every possible scenario.

Then I started worrying that we were using Jake’s vacation days for something frivolous and something big and pressing would come up later in the year…like a surgery or a long hospital stay.  Those days that he builds up are precious to a family like ours. I remember having to sit alone for Malachi’s second big brain surgery because Jake had to be at work and I never want to experience that feeling again.

Then I started worrying what people will think…I know this sounds silly but stick with me. When Malachi was born several of Jake’s coworkers donated their sick days so he could be close to the hospital after his sick leave was done. People have monetarily helped our family in many ways. What would people think about us taking such an elaborate and long vacation?

I don’t believe in “me” time. I think that concept is something that the world created to make us feel better about our selfish tendencies. I believe so strongly that when God calls us to something hard that He will provide the energy and strength we need…we don’t have to proclaim “me time” so you can refresh. Refreshing comes from the Lord.

But I do see the benefit of making conscious efforts to give Malachi and Levi this family time. Mommy and daddy intentionally stretch themselves as thin as possible each week in an effort to “in humility value others above yourselves” as the Bible says in Philippians 2. This week we will be able to divert all of that energy into putting our children first and giving them our full focus.

So as the week and the worry went on I had to keep catching myself and remembering that worry is not of God. It is actually the opposite of resting in Him. When we allow our mind to stay focused on the potential bad things we lose sight of the good things God has in store for us. Even when the blessings come our way we tend to miss them because we are distracted by the worry.

So for the remainder of his week I am going to be trying extra hard to not let worry steal my joy, or worse steal the joyful moments from my children. Inevitably I will fail over and over and over again, but maybe those moments of weakness are the reminder that I need to stay closely leaning on the Lord.

I know this is a short and choppy entry- I am thoroughly exhausted from staying up with these boys. Please pray against all emergencies and sickness. And a week of no regrets for mom and dad as we navigate through a new adventure.

Much love,

Leah

 

 

 

 

I Will Fear No Evil

This week has been a roller coaster of health for our sweet Malachi. I don’t want to drown you in details, so I will do my best to summarize what has been going on.

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Last weekend Malachi started running very high temperatures and medicine wasn’t helping bring them down much. We assumed he had the flu and it needed to run its course, but after several days of the high fever and no new symptoms we started to contemplate taking him in. We have to be cautious with hospital visits as we don’t want to expose him to something worse than what he already is dealing with.

Tuesday morning when we woke up we noticed that Malachi’s feet and arms were an ashy purple/gray. It was alarming enough that I immediately started packing a bag for a multi day stay in the hospital and headed straight to the ER with him.

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They took him straight back to a room and started running a barrage of tests. Their initial assumption was that his VP shunt was malfunctioning- the shunt helps his spinal fluid flow out of the brain ventricles so if this ever malfunctions we have to go straight into emergency brain surgery. Malachi had a CT scan and some x-rays done which all showed that his shunt was working perfectly.

We ran a respiratory panel which came back negative for all of the biggies like the flu, but positive for something called coronavirus. Since this was a viral thing there isn’t a treatment; you just let it run its course.

We also catheterized him to get a urine sample straight from the bladder and it showed white blood cells and protein meaning he had a urinary tract infection. Malachi then had an ultrasound done on his kidneys to make sure he didn’t have a bigger issue that we were missing, which he did not.

After a very long day in the ER we headed home with an antibiotic and our fingers crossed that it would do the trick. At this point Malachi hadn’t eaten since Saturday but was well hydrated with pedialyte through his g-tube. He was cranky, exhausted, and still feeling crummy. He is a hard stick and required six pokes just to get a blood draw, not to mention all the uncomfortable tests and imaging.

But as the days ticked on Malachi seemed to be getting worse instead of better and his feet continued to turn purple whenever he was seated at 90 degrees. On Thursday I took him to see his pediatrician and repeat his blood work. I also asked that they do another respiratory panel as I was worried he may have picked up something new in the emergency room. His blood work showed that his white blood cell count was in a safe range, meaning the antibiotic was knocking out the infection. They suspected that it had made its way to Malachi’s kidneys which is why he was still so sick.

But Thursday night his fever was still at 103.4. Friday they called me back and mentioned that his respiratory panel showed that he had a new bacteria growing in his lungs which they assume was the cause of his high fevers still.

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So in summary: urinary tract/kidney infection that is treatable by antibiotics, coronavirus which has to run its course, and bacteria in the lungs which is treatable by antibiotics. The whole week has blurred into what feels like one long day full of vomiting, temperature taking, medicine giving (Malachi is getting 15 doses of things a day right now), unpleasant side effects of said antibiotics, and sleepless nights.

We did manage to get a few sweet smiles throughout the week, but you can tell how weak he is.

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We obviously canceled all therapies and appointments and have been staying in and watching Malachi like a hawk. Most of the week Malachi was unresponsive and cranky to anything going on around him. As soon as Levi would enter the room Malachi would sign no, and didn’t want him anywhere near him. This was the sickest he has been in quite a long time.

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Whenever we have to go to the hospital I often have to laugh to keep from crying. Thankfully we have made lots of friends over the years so when we walk in we are greeted by friendly faces who already know our Malachi. If I wanted to focus on the fact that we are on a first name basis with many of the hospital employees, that could very quickly bring me down. But instead I choose to focus on the kindness and familiarity of the place; it reminds me of how big Malachi’s sphere of influence has grown.

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Levi has been super sweet to Malachi and can tell that he isn’t feeling good. He keeps going over to him and talking quietly to him while kissing him on the head. I tried to film a small bit for you:

When Malachi was in the NICU I frequently read him the book On the Night You Were Born. One of the lines says: “Because there had never been anyone like you… ever in the world. So enchanted with you were the wind and the rain, that they whispered the sound of your wonderful name. It sailed through the farmland high on the breeze…Over the ocean…And through the trees…Until everyone heard it and everyone knew of the one and only ever you.”

I have watched this line come to life over the last 6 (almost 7) years and it never ceases to amaze me how far Malachi’s story has traveled. Yes, locally Malachi is known very well but his name is continuing to float on the breeze and find its way to other far off places. In 2019 this blog was read by 195,000 people in over 140 different countries. Ummmm what?!? Literally hundreds of people in Australia, Germany Ireland, France, Denmark, South Africa, Italy, Israel, Egypt, Japan…they have come here to read about our special little boy. I can’t even begin to fathom how that happens, but it blows me away.

My prayer for 2020 is that God continues to use Malachi to bring people closer to Him. What a big and important job He has given to our warrior.

This week was a very hard week for Malachi, and several times I caught myself wondering if this would be the sickness that took him away from us. Each night I would pray fervently with Malachi that he would wake up completely healed, and each morning he seemed to wake up sicker than the night before. He wanted to be held, but holding him caused his feet to change colors so we would lay in the bed with our heads touching and hold hands while we talked about the future.

I had to keep reminding myself about Daniel in the lion’s den. When we are put in dangerous situations we always have to remember that the will of God for our lives is much more powerful than the danger around us. If God wants to shut the mouths of the lions, He is certainly powerful enough to do so. We can relax and rest comfortably in the arms of God knowing that He authored the ending.

I wrote this around 3am one night; God had been pressing it on my heart to share it with you all but my mind was so foggy I didn’t have the clarity to write it out until one particular night. Malachi was steadily growing worse and had finally fallen asleep as I typed these hard words:

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Even though I walk through the valley of the shadow of death I will fear no evil.

This has been a shadow of death week. I know that sounds dramatic, but in our medically complex world it doesn’t take long for mild to become life threatening. Our special children don’t follow flow charts, textbooks, or “usually…” Each time we loaded up to go see the doctors again I caught myself wondering if this would be the last car ride, the last photo, the last time he would see Levi.

Malachi and I are so connected, and if I allow myself to fear as we walk through the valley of the shadow of death so will he. So instead we spend our hardest nights talking about heaven. Truthfully, it is one of his favorite things to talk about.

This week we had lots and lots of heaven talks. We talk about who will run faster in heaven, daddy or Malachi. We talk about how Malachi will have to teach Levi how to climb the trees there. We talk about the walks and talks he and I will have there and how I can’t wait to hear his version of his life here on earth. We talk about him wrestling his buddy Johnny, who made it there before Malachi. We talk about how beautiful the angels will sing and how exciting it will be to praise God forever with them. We practice the songs together that the Bible tells us the angels sing in Revelation.

I tell him about the beauty of heaven and how lucky he will be on the day that God tells him it is time to be with Him there.

I don’t want him to ever fear the shadow of death….so I too am learning to reach for the rod and staff for comfort as we walk through that valley together.

This week that valley led to a clearing. But one day that path will take a different turn. I don’t know if I can ever truly prepare my heart for that day, but I know I can prepare Malachi’s heart.

I can teach him that God’s timing is perfect. I can teach him that God loves him and he is one of God’s most treasured creations. I can teach him that God has ordered his steps already and has chosen the day He will call him heavenward. I can teach him about how God placed him on this earth for a reason. I teach him, and oh how he listens with such excitement- eager for the day he gets to see God the Father face to face.

May we all embrace our valley of the shadow of death as gracefully as Malachi…choosing to see the beauty that awaits instead of focusing on the evil along the way.

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Tonight is Malachi’s first fever free night in 9 days. Yesterday was the first day in nearly a week that he had tolerated any food in his belly, so he has clearly lost a significant amount of weight. We are going to be spending the next week trying to re-strengthen and get as close to his baseline as possible.

I hesitate to even mention it, because I don’t want to have to deal with disappointment if it doesn’t work out, but we are planning to leave on Saturday to go on a week long family vacation to Orlando with Jake’s siblings and parents. This is HUGE for us, as we don’t do things like this ever. We have always hoarded Jake’s sick days for surprise hospital stays, so we are really stepping our of our comfort zone on this one, trusting that we won’t need these days later on in the year. Traveling with the boys is also incredibly stressful, but traveling with sick boys that may need a hospital at some point while we are gone is a whole new level of stress. Please pray with us that we are able to get strong enough to go on our trip as planned.

And just for giggles, here is a silly video of Levi to end on:

Much love,

Leah

 

Christmas Chaos

We have crammed an unbelievable amount into the last seven days. To keep me on track I will chunk the week into the big events!

Let’s start with the beginning of the week….

NICU Service Project- Tuesday

Early on Tuesday morning we loaded down several cars and hauled $7,500 worth of presents down to the NICU. A whole crew of people met me in the parking garage and helped bring the bags and boxes up to the 5th floor and we started to organize the tables.

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We categorized everything by price range and quantities and the moms were able to choose at least one thing from each of the 9 sections, filling a giant Target bag. Another organization had donated $25 Chick-Fil-a gift cards for each of the families so we were able to distribute those too. On Friday the hospital had given a voucher to each of the NICU families for them to trade for a shopping trip!

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In my head I had thought through how everything would go, and the day far exceeded my expectations. I knew the moms would be grateful and enjoy the shopping part but they were so much more emotional than I expected. You could see that they were genuinely touched by the gesture, and many of them had been anxiously looking forward to the day. Seeing their excitement and joy as they picked each item was so beautiful. Several of them wanted to know how they could get involved to do this again for other families next year. I can’t say with certainty that we will do the project again, as we are often in the hospital for the holidays ourselves but if God leads us that direction we will go for it again!

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In addition to the hundreds of people who donated, and the dozen people that helped haul stuff into the hospital, I had 5 women stay at the tables and help me restock and distribute. One of them is a labor and delivery nurse that used to be in my youth group, one is a early intervention gal that worked with Malachi when he was young, and the other three were NICU moms. We each had signs with our babies photos and information to help strike up some conversations. If the moms were having a hard time choosing an item we were able to offer great advice based on the variety of NICU babies/diagnoses represented.

A HUGE shout out to all of you who helped make this happen. Again and again we keep witnessing God work and explode an idea far beyond anything I ever imagined. I read every single gift receipt and note that came with the packages and seeing the diversity in all of the generous givers brought me more joy than I can communicate. You all are amazing, and I hope you share in the same joy I did at seeing some of these photos.

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Jake, Levi, and Malachi joined us and we were able to introduce them to several of the parents and answer their questions. One of the parents had a baby in surgery to get a g-tube and we were able to show her Levi’s and talk through the good, bad, and ugly.

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Levi also got to see one of his favorite NICU nurses, Valerie. She kept me sane for those few weeks we were in Chattanooga prior to the transport to Cincinnati.

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I had talked to the boys at home all week about how we were collecting toys for the babies in the hospital who can’t be with their mom and dad all the time. I talked to each of them about their months in the hospital and the toys that they loved to play with while they were there. Malachi clung to every word and was so excited that the babies were going to get some of those same toys. He seemed to truly understand what we were doing. Levi’s reaction was “I pooped”, our favorite phrase of the week.

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I also included a card in each of the bags that talked to the moms about God’s love for them. On the back I included some of the information about Malachi and Levi and left contact information if they wanted to talk about anything, from spiritual things to medical jargon. I have had a few of the moms friend me on Facebook and I am hoping to make some God ordained connections with many of them, much like He has done with the moms that helped me at the tables that morning.

We used a portion of the donated money to hire a Santa to go from bed to bed in the unit for pictures. I had worked it all out with the hospital for us to provide the funds and they would figure out the rest, since the Santa had to be hospital trained. But the woman that was scheduled to walk Santa around and take the photos was unable to do so, so they asked me to cover it about an hour before his appearance.

To be completely honest, my initial reaction was hesitancy. I was anxious about being back in the unit…if my memories/PTSD were attacking me OUTSIDE of the unit, I couldn’t imagine what being INSIDE the unit would spark. But I also really wanted those photo keepsakes for each of the parents, so I agreed and pep talked myself for the next two hours leading up to it.

When I walked through those doors I had that wave of nausea hit and I took a deep breath and looked down at the ground while I walked. What actually snapped me out of it was that I passed Levi’s pulmonologist, and I figured he would be mad at me for leaving the sleep study early so I went into hide and seek mode trying to avoid his line of vision.

There are seven different pods in the unit and the census of babies was around 60. We got photos of him with each baby; if the parents were present we used their phones for the photos and if they weren’t we used the NICU camera so they could print it out for them.

The more we walked around the less anxious I became, and I truthfully really enjoyed being able to take the photos and try to get the best picture possible for the moms. I remember how important those keepsakes are. It was also so fun to see the nurses again and see their confused faces as to why I was back and baby-less.

But the most rewarding part for me was to see firsthand how excited the parents were to open their new gifts. Many of them had already dressed the babies in their new outfits/hats/hairbows, wrapped them in their new blankets, and were playing with their new toys. Seeing those tiny babies in clothes made specifically for their size (2-4lbs) was so sweet- they didn’t even make those clothes when Malachi was that small.

Side note- I did get spotted by the pulmonologist and we briefly talked about the sleep study. He didn’t seem to angry, so that is a plus. We will have an appointment in a few weeks and talk in more detail.

Christmas Day- Wednesday

Jake and I have been trying hard to figure out what we want the holidays to look like for our family. Our perspectives are forever changed by the blessing of our two miracle boys and we don’t know how many years we will get to celebrate each holiday with Malachi…when you think about that fact you tend to get a little more serious about teaching the meaning behind the holiday.

We also recognize the need to do things just for the fun of it too- so I sent Jake out in the backyard to cut down a 5-6 foot Christmas tree.

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As you can see it required a trim to hit the goal height haha. And we figured out after the fact that the branches were too thin to hold ornaments and there was a nice layer of thorns on each of the branches. Christmas tree fail! Malachi loves it and Levi (and I) have a healthy fear of it.

We want Christmas to be primarily about blessing others and making the holiday less about “self”. I want my boys to understand the heart of Christ and to learn the emotion of sacrificial giving at an early age…not just giving others your junk or the things you don’t like anymore. So the day before Christmas Eve we packed up a giant box of new and gently used quality toys and dropped them by a trailer in our town for a family that had called the church office and asked for help for Christmas. While I packed the box we talked about each toy and how much we loved the toy, but it would make another little boy and girl smile so big. Malachi loved packing the box and talking about each toy. Levi…well we will keep working with him on that one haha.

For their Christmas morning we stuck with our new tradition of 4 gifts each: something you want, something you need, something you borrow, and something you read.

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Levi’s favorite new item was a broom and mop set; he loves carrying around my broom and dustpan so finding one that was just his size was perfect. It also came with a duster, which apparently is meant for Malachi’s head.

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Malachi got two new switch adapted items- an automatic card shuffler (the something you need) so that he could participate in our card games with a special job all of his own, and a penguin slide toy (the something you want). He has had this toy before but it broke so he was thrilled to open a new one. I have some great videos of Malachi demonstrating his new gear to you but it is storming here in the mountains and the internet isn’t cooperating.

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And Jake got a tetanus shot. Yep- stepped on a nail in the basement on Christmas day.

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We stayed in all day playing games and picking at our Christmas meal. Levi “helped” with the deviled eggs as you can see.

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MRI- Thursday

After our botched sleep study from last week I was praying hard that Levi’s MRI would go smoothly. We packed up and left the house at 5:30a the morning after Christmas and made the trip back down to the hospital. We had to stop his feeds around midnight so he was a hungry and cranky boy. On top of that Levi is now suspicious of everything that looks medical and everyone dressed in scrubs so as soon as we started the triage process he began panicking. With his medical history and compromised airway they decided that he needed to be under general anesthesia and intubated for the procedure.

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If you have been reading the blog long you will know that I have some major emotional issues with the MRI room. When Levi was in the NICU they attempted an MRI here and it did not go well, so we had to do it again a few days later. The whole experience was very traumatic for him and I remember sobbing in the waiting room with uneasiness.

Then a few months ago I had to bring Malachi here for an MRI. It did not go well either and we ended up walking out- I turned into a basket case and had an emotional breakdown because it wasn’t the test they told me he would have. With Malachi’s medical devices (his shunt and the metal coil near his heart) MRIs are a little more complicated so changing plans last minute made me snap.

But here we were, back in those same chairs and in that same environment. The flashbacks were coming at me hard. Then a kid walked in the waiting room with the flu and snapped me out of my self pity mode and into germ blocking mode.

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Levi did well during the procedure but needed to spend some time in outpatient recovery so they could monitor his respiratory status a bit longer than normal.

Youth Ski Trip- Friday, Saturday, and Sunday

On Friday morning we loaded up a few church vans and cars and drove a group of 40 to Indiana to go on a ski trip. Jake and I started doing ski trips back when we first became youth leaders at the church in 2012. It is something he and I did with his youth group in high school and became one of the highlights of our year- we wanted to be able to provide that for our youth group as well.

We took a few years off when I became pregnant with Levi but decided this would be the year we tried it again. Yes, we are crazy.

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We knew it would be a lot of work, especially with the boys in tow but we didn’t account for how exhausted we would be with such a busy week leading up to it. Lesson learned! In addition to being exhausted, Levi’s throat was swollen from being intubated so almost everything he put into his mouth made him projectile vomit. We didn’t find this out until after we started our adventure of course.

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We made the 5 hour drive and settled into the hotel Friday evening, getting rested up to start skiing Saturday morning. Unfortunately Malachi started running a fever overnight on Friday. He also started having some pretty big seizures that were exhausting him.

We asked some friends to pick up a thermometer and meds for us from the drug store down the road and tried to get the rest of the group ready for the day. The boys getting sick was one of our worst case scenarios- Jake needed to be on the slopes keeping an eye on the teens and I was to be the checkpoint in the lodge in case of an emergency.

We got everyone loaded up, geared up, and on the slopes and then the boys and I went back to the hotel to rest. Malachi’s fever on reducers was hitting in the 103s and he was miserable. I was debating what to do- should I load them up and make the 5 hour drive home alone? Or should I just tough it out and make the drive back on Sunday with the group? I was worried about him overheating in his car seat and it being too dark for me to see him in the mirror. With his seizures amping up I decided it was best for us to stay and just hunker down in the hotel room until the group left Sunday.

The three of us watched a lot of movies, played a lot of games, and took some solid naps. The teens had to text me every few hours to check in, letting me know they were alive and safe. Malachi didn’t get better but didn’t get worse; but he was struggling to keep down any of his meds, including his seizure medications. I finally got him to keep a bottle down around dinnertime. And Levi also stopped throwing up after his first round at the lodge during the check in process.

It was quite the adventure. I guess you could say it was a Carroll style trip filled with chaos.

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We just got home a few hours ago and Malachi is very happy to be here. He smiled for the first time in a long time when he saw his Christmas tree lights. He also giggled at Jake, which was refreshing to hear. His fever is hanging around 101 but no other symptoms as of yet and his oxygen levels are at a safe range.

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And he is officially wiped out and went to bed around 7:00. He has been going to bed around midnight lately so this is a obvious indication of how well he is feeling, poor buddy.

I had some really great friends from church join us on the trip, and a few of them offered to sit with the boys while I went skiing with Jake. I shrugged off the offer all day long, especially as Malachi’s fever didn’t budge. But two of these friends are nurses and continued to push the offer at me. The ski resort had a special on skiing from 8pm-midnight so at 9:00 I hit the slopes with Jake and got back just before midnight.

Jake and I love to ski together but haven’t had the chance to go skiing together in quite awhile. Actually, the last time we took a trip skiing together was 9 years ago at the same exact resort on the same exact day!! What are the odds!?! Here is a photo of 2010 and 2019.

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It was so weird being childless. At one point Jake skied down the hill ahead of me and it was literally just me, zooming through the woods with the cool breeze on my face. I felt like a person I once knew. It was such a surreal feeling of carelessness. I can’t afford to be careless much anymore, so the fleeting moment was a special one. The fresh air was therapeutic.

Devotional Thoughts

When I write these blogs each week I very rarely go back and read them. I just type and ask God to write what someone needs to hear. And He always comes through, allowing my fingers to move regardless of my level of exhaustion or mental clarity.

But this week I read an old post from 2017 and realized that God may have just written that post through me for future Leah. Yes, I am aware of how sci-fi and odd that sounds, but as I read the entry it pricked my heart and spoke to me so loudly.

The backstory- we were in Cincinnati with baby Levi, living in a hotel room down the road from the NICU because the Ronald House was full. It was hands down the darkest time in my life. Nothing else comes close to those few months in Cincinnati with him. Here is the excerpt I would like to share with you tonight:


I have been back and forth with what to share with you this evening. God has been placing so many verses and thoughts on my heart these days, and none of them seemed to feel right for this entry.

But as I read Isaiah 61 this evening I couldn’t help but get goosebumps all over my body. Chapter 61 is captioned “The Year of the Lord’s Favor” which made me laugh out loud as I thought to myself “That is definitely not how I would title 2017 for us Carrolls!”

But oh how I will pray and hope that we will be able to title our 2018 with such powerful words!

Now before I start talking about this chapter, let me warn you that I am totally taking these scriptures out of their original context. Isaiah wrote this chapter to foreshadow Jesus (a Messianic prophecy). In fact, in Luke 4 Jesus is in his hometown of Nazareth and is handed a scroll to read in the synagogue..and it was this exact chapter from Isaiah. He reads these words that were written about him so many years ago and then says “Today this scripture is fulfilled.” It is his drop the mic moment and leaves everyone there furious at His claims to be the Messiah.

But when I read this chapter I can’t help but desire to apply it to our situation right now, and it brings me so much encouragement. Let me highlight the verses that spoke to my heart. These words are my prayer and hope for 2018 for our family.

“To proclaim the year of the Lord’s favor…to comfort all who mourn, and provide for those who grieve in Zion—to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

Their descendants will be known among the nations and their offspring among the peoples. All who see them will acknowledge that they are a people the Lord has blessed.”

Whew I just got goosebumps all over again. The two lines that get me the most are:

They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

The Lord has clearly planted us exactly where we are right now. We aren’t in Cincinnati by chance; we aren’t in this situation because of something we did or didn’t do. I am choosing to believe that we have been planted here so that the Lord can display His splendor through our situation. So far we have had many dark days, but there will be a day when that darkness will be overpowered by the bright light of God’s glory. My prayer is that everyone who looks at our trials and bumpy road will undeniably see the hand of God completely in control of every second, and that in the end His splendor will overshadow any dark moments we have experienced.

The second line that blows me away is:

All who see them will acknowledge that they are a people the Lord has blessed.

Oh how I pray that line over our 2018. I pray that every member of our family would reflect the goodness of our God. I pray that instead of looking at our family with eyes full of pity, instead we would be seen through a lens that reflects the AMAZING blessings that God has given to our family…as unique and different as they might seem.

Every time we take Malachi out in public we are stopped by well meaning people and they say things that reflect the pity they have for us. “Your life must be so hard.” “God must think a lot of you to give you such a challenging life.” The looks and comments we get are absolutely saturated with a tone of pity.

We usually just smile politely but everything inside of me wants these people to see how blessed we are. We have two beautiful gifts from God. Malachi’s joy is unparalleled and clearly comes from the Lord. Yes, our life has unique challenges but oh goodness does it also have its innumerable unique blessings!

I pray that those words are spoken about my little family and that others would see us and say “Those Carrolls, they are a people the Lord has blessed.” I pray that those eyes of pity would become eyes of amazement as you can’t help but see the hand of God in our lives.

May our 2018 be full of miracles for both of my boys.

Merry Christmas from the Carroll family!


 

As I read that I started to cry some necessary tears over how far the Lord has brought our family.

…to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.

God has been slowly replacing our crown of ashes for a beautiful one.

We are being covered in the oil of joy instead of mourning.

God has replaced my spirit of despair with a garment of praise.

We have been through the Refiner’s fire so that we would be able to display the Lord’s splendor.

All who see them will acknowledge that they are a people the Lord has blessed.

Oh how I continue to pray this over my family. I pray that people look at our family and see God’s hand. I pray that we continue to see the blessings of the Lord instead of being clouded by the darkness.

I say all this to encourage each of you. You may be in a dark place right now. You may be suffering through some really big things…but those things might be a necessary step in your story. I pray that one day you too will stand on a mountain top and be able to reflectively see your past experiences in the valley from a new vantage point.

It’s our walks through the valleys that give us the desire to fight and climb to the mountaintops.

I am continuing to pray these verses over my family. And I have secretly picked out a fresh, empty spot on the wall for the words to go one day soon.

May God bless you as you enter into a new year. Please pray for sweet Malachi, that he is able to fully recover quickly from whatever is attacking his system. Please also pray for wisdom during this sickness, that I know when to react and when to watch and wait. Sicknesses always have the potential to bring on some major mommy guilt if I miss his cues.

God bless,

Leah

Highly Favored

Tonight Levi and I were supposed to spend the night at the hospital for another sleep study. If you are new to the blog you need to know that I struggle tremendously with these but both Cincinnati and Chattanooga specialists agreed it needed to happen to check his carbon dioxide output and sleep cycles now that he is off of oxygen at night.

We went in with a genuinely good attitude and the best of intentions. Last night Levi had a g-tube malfunction around 3am and I had to get him out of bed to fix it. He decided he didn’t want to go back to sleep, and we obliged hoping he would be utterly exhausted for his big sleep test.

I spent the day packing his hospital bag with his favorite blankets, stuffed elephant, books, snacks, distractions…and I even cut his hair a few curls an hour (he didn’t want me touching it so I had to be creative) in preparation for the glue mess after.

As I made the one hour drive to Chattanooga in the dark and in the rain (aka ideal car seat sleeping) I periodically threw things back to Levi to keep him alert and awake. When that stopped working I found a roll of painters tape on the floor of the van and sent back 6 inch strips and let him be as destructive with it as possible. He is really into stickers right now so this was the next best thing haha.

These photos were from 6pm. Look at that exhausted face! The room wasn’t quite ready so I let him play in the fire truck for a bit, squirting him down with hand sanitizer every thirty seconds and trying to suppress my imagination that saw millions of germs breeding within the truck. I was just so desperate to keep him awake and active.

We made it into the room and Levi made it very clear we weren’t going anywhere near him with those wires. I got him to fall asleep by 8pm and we attempted to sneak the leads and electrodes on him. We got the two bands around his abdomen and a few leads fed through his clothing and he woke up in a rage- like Incredible Hulk style. He started grabbing and pulling any wires he could reach, ripping the lone successful one off of his head. He was thrashing around like a raccoon in a pillowcase so we stopped our attempts and I tried to get him back to sleep. Obviously our trust circle had been broken so getting him calm again was a challenge.

A bit later we tried again, same results. He also started hyperventilating and that makes me nervous with his oxygen history. After 4 hours of this we had zero leads hooked up and he was wide awake and not letting his guard down.

In order for the study to be successful you have to have 5-6 hours of solid sleep, and we had to be out of the room by 4:30am. As I looked at my wild eyed and terrified son and then looked at the clock nearing 10pm I made the decision to wave the white flag and leave.

Ah yes, the familiar walk of shame. We know it all too well haha.

The specialists will not be pleased with me, but I truthfully didn’t know what else we could do differently. I don’t know that any 2 year old would gladly allow 20 electrodes, a cannula, a pulse ox, two abdomen bands, and several other leads on his body while sleeping.

On Thursday morning at 6:30am we will be back at the hospital for Levi to undergo a sedated MRI to check the extent of his brain damage. The last brain images at two weeks old showed three small spots of brain damage, likely from a lack of sufficient oxygen. The neurologist is convinced he has incurred more damage since that original scan and wanted some new images. We won’t discuss the results of the sleep study or the MRI for several weeks so for now we are just focusing on getting them over with.

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Obviously Levi has developed a fear of all medical providers, and I can’t blame the kid! He has been sleeping terribly lately and tugging at his ear so I was worried his ear infection did not fully clear up and took him by the pediatrician. Thankfully the infection is gone but sweet little Levi didn’t like them looking in his ear. I got him to crack a little smile through his tears.

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We have been trying desperately to keep both of the boys in a bubble as we prep for Levi’s big procedures and our trip to the NICU to deliver Christmas gifts. Thankfully our pediatrician has a whole separate suite where the sick kids go, one of the main reasons I chose that particular office.

But we did branch out and attempt a few adventures this week! Every year an organization in Chattanooga offers free switch adapted toys for special needs children that use switches. Malachi has always looked forward to this event and loves getting to shop for his toy. We tried several, including the chipmunk that made him cry last year (yep, he cried again and signed NO NO NO) and he settled on a cute little fire truck. It blares a loud siren and the wheels spin which he really loves.

We are working so hard to teach Levi how to respect Malachi’s boundaries. He hasn’t learned Malachi’s signs yet and doesn’t know to look for them. So even when Malachi tells him no he ignores him, which hurts Malachi’s feelings. We made it very clear to Levi that the fire truck was for Malachi and he could sit and listen to it but not touch it. What a trial it is for an impatient two year old!

But Malachi LOVES showing off for Levi. He was so proud to show him the toy. And poor Levi communicates to Malachi with sign language, particularly “more”, and Malachi can’t see him. They need an interpreter right now but I know it will get better over time.

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I can’t even begin to describe the bond these two have. It is such a pure and beautiful love. What a blessing Levi has to grow up with such a uniquely amazing brother.

We run into a lot of other children with special needs, and seeing Levi interact with them is so beautiful. He has no fear of differences, and in fact wants to embrace and love on them, just like he does for Malachi. One of Malachi’s special buddies at church has been the victim of his laser focus and he runs over to her to shower her with hugs and kisses, touching her face and talking so dearly to her.

This weekend we went to lunch with another special friend, Lincoln. Lincoln and Malachi spent time in the NICU together, although we didn’t connect with them until a few months ago. Lincoln and Malachi play on the same soccer team. By the end of the meal Levi was climbing Lincoln’s wheelchair to sit on his lap and give him hugs.

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Sometimes there are hidden blessings in this life, and sometimes there are blessings that smack you right in the face…this is one of those. Our life is teaching Levi things that I could never teach. The empathy he is developing, and the vision he is developing to see through differences is something that only experience and exposure can create. What a wonderful person Levi will be because he has Malachi in his life.

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I successfully swapped out both of the boys g-tubes this week! This is one of those things I put on the to-do list and consciously look over each week. But the valves were getting a little weak and the balloons that hold the tubes in place are leaking a bit so a swap out was necessary. Malachi handled it like a champion and it was the easiest change out for Levi, although he fought me like a squirrel.

Levi has been a toddler tornado lately and he is fast as lightning. These photos will provide a good summary:

Mommy tried to shower….this was 30 seconds after I got in…

Mommy tried to give Malachi a shower and started the water to heat it up; I carried Malachi in and found this…

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Levi went to feeding therapy…yep…his hair is covered in a variety of sticky foods…

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The closer we get to Christmas Eve the more excited I am getting! This week I have watched all the pieces fall into place, a clear sign to me that God is in this. Target donated giant bags for the moms to put their goodies in. We have gathered the most beautiful little Santa hats, created by some beautiful local people.

I have written each of the moms a personal note and reminded them that they are seen this Christmas and that they are loved. We are going to spend the next few days praying over each of the boxes and bags of gifts, praying specifically that they feel the presence of God as they open each one.

I keep flashing back to the Christmas in Cincinnati Children’s with Levi. He had just had a major operation and we were living in a hotel since the Ronald McDonald House was full. The hospital had a similar event and allowed me to pick some items for the boys…I didn’t realize until after how wonderful it felt to acknowledge the fact that I was a mother of two amazing children. Looking past the medical tubes and wires and trying to choose things that little Levi might enjoy made me feel like a mom.

I pray that each of these moms can feel that same flutter of normalcy.

We have literally received hundreds of items, over $7,500 worth of tangible things! Each mom will receive about $100 in presents and a $25 Chick Fil A gift card (not included in the $7,500). We have condensed the items down as much as possible for transport but will easily fill three trucks. Then there is the matter of getting the items up to the NICU hallway to set up the tables. It is SO HARD for me to ask for help, but no matter how I calculated it it simply was not possible to do alone. I posted on Facebook asking for help and so many people have stepped up to help make this a success.

There are two off duty nurses and four former NICU moms that will be there to help restock the tables as the moms shop. Our hope is that we can connect with some of them and become a support. We have created signs for each of our NICU grads to spark some conversations about particular struggles they might be facing.

Speaking of the NICU…this week I made a trip up to scope out the area. It doesn’t matter how many times I travel that path through the hospital…it always brings back memories and emotions. There are certain areas I have to visually avoid. The windowsills I had to sit in, catching my breath between sobs. The phone I had to pick up to ask permission to go in and visit my babies. The private room that Levi was in before his transfer had a door that led to the hallway. The spot I sat in waiting for Malachi’s second brain surgery to finish. I remember staring at the elevator doors, anxiously waiting for the surgeon to walk through them.

Ironically enough, our tables of gifts will be set up directly across from those same elevators.

But as I stopped by the NICU unit this week those emotions were a bit more subdued. They were still there, but it felt like a book I read a long long time ago instead of fresh wounds. Time has healed my heart in so many ways. And focusing on this special project has helped me heal.

I even picked up that phone to drop off an early bag of gifts to one of the moms we connected with through Facebook. I recognized the voice of the clerk on the other line but didn’t give any identifying information, just told her we needed to leave a bag at the desk for a friend. Within two minutes a flood of nurses came through the doors, so excited to hear that the boys had come by the unit for a visit. I guess the clerk recognized my voice too and announced over the intercom Malachi and Levi were outside haha!

Seeing those nurses was refreshing. I carry vivid memories of each of them, as they come to be like family. I can remember each of their eyes as I studied their faces so many times, trying to determine whether I should be worried. When you spend time in the NICU you become an expert at reading body language and unspoken emotions.

Both of the boys loved seeing the nurses too, Malachi in particular! He has such a good memory, part of me wonders if he remembers their voices from his stay or baby brother’s stay. The work that they do is so meaningful.

If you get time this week I want to encourage you to read Luke 1:26-38. It is a conversation we all know to some extent, the conversation between Mary and the angel Gabriel. But I never truly connected with Mary before I became a mother.

When you read it through the eyes of a mother things look so different.

Her reaction to the angel was much like mine would be. The Bible says she was “greatly troubled at his words”.

But the angel tells Mary: “Do not be afraid, Mary; you have found favor with God.”

Time out for a minute.

The angel came and delivered the news that she would go through a shameful pregnancy and birth the son of God…a child that would later die a cruel death that she would have a front row seat for.

There is a quote by C.S. Lewis that says “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

God knows each of us. He knows what kind of person we are and He also knows the extent of the burden that each of us can bear.

What if instead of feeling troubled by the big things God puts in our life we instead choose to see them as an honor from God? What if we begin finding strength in the idea that God chose YOU for this very challenge.

What if we begin to see ourselves the way God sees us…as highly favored and capable of so much more than we even know.

But the most beautiful part of this particular scripture is Mary’s response: “I am the Lord’s servant, may your word to me be fulfilled.”

What boldness!

Her initial fear turned to resolute steadfastness as she welcomed the challenge with the heart of a servant. She acknowledged that her life was no longer all about her, but instead about serving the Lord, even when that path would bring pain.

Life with these two boys is a challenge- one that I never saw coming. My life right now is a polar opposite from the one I envisioned a decade ago.

But God knew I wasn’t made for the typical. He created me for something bigger and greater than typical. He created me to carry the testimony of two very special boys. He created me to walk hand in hand with each of them and move mountains in their path.

Sometimes God’s plan for us isn’t typical, and we need to embrace that.

What an honor my gift of motherhood has been.

“What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

May God continue to cultivate my perspective as He continues to change the places I am comfortably standing. And may my heart continue to stay soft enough to gladly work for Him.

Much love,

Leah