A Season in the Sunlight

What a week we have had!

Let me kick off this entry by telling you about Malachi’s big debut as Grand Marshal of the Christmas tree lighting in our small town! Malachi has been so excited about the big day and we started practicing at home with his recordable switch. We would turn the lights off and he would activate his switch that said “Ready, set, light up that tree!” and when he pushed it we would flip the light switch on.

When the big day came he was ready to roll. We had family come into town for the big event and a visit so I gathered all the children in the group and let them do the recording into the switch so they could be involved as well. It was a rainy day but they had a tent all set up and ready to go for the Grand Marshal.

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Malachi gets overstimulated very easily, which is completely understandable to me. If I had trouble seeing things I think I would get overwhelmed too! I was watching him closely and could tell he was really trying hard to process all of the familiar voices, the rain, and the new environment but he was clearly loving all the attention.

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The tree was beautiful and Malachi was one happy boy. We watched the video over and over again at home and his reaction really warmed my heart so I thought I would share it with you all:

And here is the actual video from the event if you would like to see:

I wish I could see the world through the eyes and ears of Malachi. He has such a gentle and content spirit about him that is breathtakingly beautiful.

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A special thank you to all of the people in our community who came out in the rain to make sure he had an audience. You made his day by making him feel so important and special. He even had a special shirt given to him for the event.

Side note- Malachi’s sickness continued to progress throughout the week and has turned into a cold. He is nearly through the worst of it but with him things linger much longer than normal. His seizures were a little more intense this week than normal but we are through the worst of it. His oxygen was settling around 94 which is low for him but not yet hospital worthy. Nighttime was exceptionally rough for him so he and I have been camping out in the living room where he can sleep upright.

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I also got his cold and it has knocked me down! Anytime I get a bug, even a mild one, it turns into a sinus infection that takes a few weeks to get over. I am so thankful that Levi and Jake have managed to stay healthy. I am also thankful that Jake had the entire week off. Malachi and I spent some serious time cuddling this week.

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With it being a holiday week our appointment schedule was nice and slow- a much needed break. The boys did a few therapies at the beginning of the week (pre-cold) but we had Wednesday through Friday off. This coming week things amp back up with some big specialist appointments at the hospital. December is always a bit rough as we try to cram procedures and surgeries into Jake’s holiday breaks. This was actually the first Thanksgiving break in years we haven’t had a surgery! It was wonderful.

I got some really sweet photos of Levi one day this week as we headed to the grocery store. He was in some cute overalls so I plopped him in the side yard for some photos. They captured his personality so much more than I even imagined.

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Totally random side note, but the gap directly below the setting sun is where the bears come in and out of the woods and up to the porch. We haven’t seen one in about two months so we are hoping they are all tucked in and asleep for the season.

Jake and I don’t really do Christmas gifts so Black Friday is a little out of our comfort zone but we did need to run by Lowe’s for a few things. I am still on the fence as to if it was worth the chaos haha.

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We did stay in and play a lot of games as a family! Don’t tell Malachi but for one of his Christmas presents we ordered a switch adapted card shuffler so he can participate in our card games.

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We also spent a lot of time with our out of town family which is always wonderful. Levi especially loved chasing his big cousins around. And Malachi genuinely loves listening to other kids play with all of his toys, as odd/sad as that sounds.

We knocked out some much needed cleaning and organizing around the house and Levi has developed a hat obsession. He carries one with him at all times around the house. Some are more ridiculous than others…

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This week we celebrated Thanksgiving. The holiday has taken on a whole new meaning now that we have two medically complex children. We are thankful for every day that goes by without a medical emergency, a life altering seizure, or an airway emergency. We are thankful for every night not spent in an ICU or hospital recliner. We have experienced horrific things, so when life is “normal” we are overflowing with gratitude to God. When you know the darkness of life, you crave basking in the warm sunlight as a family.

God has blessed us with a season in the sunlight. But we are also very aware that there are others stuck in a season of darkness.

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Both Jake and I want to cultivate a life of giving in each of our children. We want them to understand that they can be used by God to bless others, but in order to do so you have to watch for opportunities and act when you see them.

“The real issue in life is not how many blessings we have, but what we do with our blessings. Some people have many blessings and hoard them. Some have few and give everything away.” -Mister Rogers

This month Jake and I are gathering items for our local NICU. The plan right now is to pair the event with a Christmas Eve brunch they are offering NICU moms and have a few tables set up with all of Malachi and Levi’s favorite NICU items. Boppy pillows, musical toys, sound machines, books, soft (and non blood absorbing) blankets…all the tried and true items that I clung to in the NICU for each of their stays. The moms will be able to come and choose a few things for their warriors and I will be including a special note that God is laying on my heart.

When I look back at their time in the NICU there are two big tangible things that I cling to: early GOOD photographs of the boys and their first outfits. I treasure those things even now. We were able to sell several big items from around our house and raise enough money to buy each baby an outfit and also purchase a Santa suit. We are going to offer each of the moms a chance to let Santa pose for a pic with each baby and my professional photographer friend will take the photo and email it to them that same day.

Here is an example from Google images:

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We need a willing Santa on Christmas Eve if anyone out there is interested!

We are working right now on collecting items and want to extend the invite to you. We have created an Amazon wish list and if you purchase from it you will have the option to ship it directly to me at the checkout (it has our address hidden but attached to the list). If you would like to contribute to the table of goodies click on the link below; there are items ranging from $4-$40.

https://www.amazon.com/hz/wishlist/ls/37UQ7Q8QWB5NI?ref_=wl_share

If you aren’t a big Amazon fan and want to donate some money towards items you can contact me at: jacobandleah@gmail.com

We can’t wait to watch God work in this, as this is a task He has called us to do! Whenever He calls us to act we are always blown away by the results.

Ephesians 3:20 “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory…”

Please pray for the boys this week as we fight to get back to full health. Pray that God continues to cover Levi in a hedge of protection, which He has so clearly done this week. And pray that Malachi is able to continue to keep things from settling into his lungs. 

And please say an extra prayer for us on Tuesday as we tackle 6 appointments, starting the day off at 7:00 and ending around 4:00. Game on!

Much love,

Leah

 

A Good Heartbreak

The Carroll family is getting some cabin fever! Our schedule has slowed down pretty significantly in the evenings so we have been enjoying lots of family time together, and some good old fashioned competition like the pre-kids days. Bonus points for you if you can figure out what game we are playing.

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On Friday morning Malachi had a pretty big seizure on the way to school. I was able to get him back to a safe level and continued with the plan to drop him off for a few hours. When I picked him back up his teacher told me he had another bigger seizure while at school. By the time I got him home he was running a temperature and had his “sick eyes”.

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We have been fever fighting all weekend and cautiously watching him to see if it turns into anything else, but so far he doesn’t have any other symptoms. Since both of the boys end up in the bedroom at the same time at some point in the night, Malachi and I have been camping out in the living room and letting Jake and Levi have the bedroom. When Malachi is sick his sleep patterns and seizures get turned upside-down and tends to wake up Levi.

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His fever broke in the middle of the night last night and he has perked up a bit today. But Levi definitely isn’t used to being cooped up in the house this long. He has been getting into lots and lots of mischief, like pouring a pitcher of milk on his head tonight. He has also been super helpful lately and likes to drop everything into the sink…everything. He has also been swirling this broom around like a chinese fighting stick, relentlessly knocking everything and everyone in his path.

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Jake and I have been trying to teach Levi about the potty in hopes it will make potty training easier in the future. We explain the process each time we go to the restroom and at one point I said “We say bye bye to the pee.” as I flushed the toilet. Apparently that was the wrong wording because he has now decided that the toilet is his friend. He sneaks in there and has conversations with the toilet, bending down really close to the seat to make sure the toilet can hear him. Last week I even saw him kiss the cover like it was his long lost friend. AHHHHH.

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While Levi’s “toddlerness” is definitely challenging my level of patience, there are so many fun things about this phase that he is in. He makes us laugh continually! He is also so conscientious about including Malachi in everything that he does.

On Thursday I dropped Malachi off at school and met another medical mama in Chattanooga. Our friendship truly is a God created one as she and her baby were also transferred from Chattanooga to Cincinnati for an airway issue. We met for the first time this past summer when we were in Cincinnati for Levi’s surgery. It is always so refreshing to be around other moms who understand our world.

We met at a mall and I let Levi play in the small play area, which was a serious challenge for my germaphobe issues. I prayed a bubble of protection over him before I let him unleash his energy. And oh boy, did he love it! He loved the climbing and sliding, but he loved the interaction with the other kids the most. He is incredibly friendly and loves to follow around the other kids and talk to them.

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After he played a bit I sanitized every safe part of his body and stripped him down before putting him in the car. And of course he got a hot bath as soon as we got home!

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Malachi has been doing exceptionally well on his horse lately and really making some progress with how he is using his body to functionally do things. When the temp drops too low we have to stop riding so we have been grateful for the tolerable temps and the forward progress.

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Jake has the week off and we are looking forward to tackling some house projects and family time. Some of our family will be coming in from Ohio to visit and Saturday will be Malachi’s big Christmas tree lighting ceremony.

I have had so many heavy things on my heart lately…things that wake me up at night and require instant prayers. It is so hard to see so many in our world suffering with big things. It is so easy to see the suffering and allow the enormity of it to overwhelm you without letting it prod you into action.

I look at the beautiful and blessed life that we have been given and I am so challenged lately to not allow myself to fall into the consumerism that plagues our world. It is so easy to find comfort in accumulated things, but that feeling is fleeting when it is rooted into possessions.

A few months ago Jake and some of the men from our church connected with a group of homeless people in Chattanooga that were living in a tent community together. One of the women at our church drove by their small community on her way to work and her heart was pricked so she and her husband asked that we find a way to minister to them.

Each of them had different factors that led to their situation…

One was an elementary school teacher that had lost her job.

One was a man that was diagnosed with terminal cancer and had chosen to not seek treatment. Jake is convinced this man won’t survive the winter.

Many of them told Jake they were one paycheck away from being able to get a roof back over their heads and had just had several catastrophic events happen that led them to homelessness. Their similar situations had bonded this group together and they looked out for each other.

Over the last several months we have been gathering requested supplies for these families…they never once asked us for money but instead asked for boots, warm socks, winter coats, tents, bottled water, propane for their stoves. We were planning a big Thanksgiving meal for them but when we went to work out the details we found out that the police had made them all leave the premises.

We will likely never see these people again. But sometimes all we are called to do is plant the seed. We were able to share the gospel with them several times and plant the seed of Jesus into their hearts. Now we have to trust that God will water that seed and continue to cause it to grow.

When you get to witness some of the suffering of our world firsthand and speak to the ones suffering your perspective changes. You can’t unsee and you can’t ignore.

My heart has also been broken for families like ours with medical children. I look at our journey, and as rough and unpredictable as each of our children have been we have been surrounded by a network of praying and supportive people in our world. There are so many medical families that don’t have that same support.

The NICU world is so full of hurt and hopelessness. There is so much darkness and so much pain.

That being said, I have felt so led to do something for ICU moms on Christmas. I have been praying about the project and asking God for guidance and for weeks I have been hearing crickets. I have learned over the years that when I try to manufacture projects like these the kingdom impact is small, but when I allow God to do the planning the impact is bigger than I could even imagine!

When I feel called towards something but don’t get the details from God right away I tend to second guess the calling. But this week I was teaching the youth about the faith of Abraham and how he walked up the mountain with Isaac, determined to walk in faith and obedience…something I am not always good at.

So even though I didn’t have a direction for my NICU project I made the decision yesterday to walk in obedience and have faith that God would tell me what needs to be done. Faith requires action. So we gathered up several items around the house that we have no need for and sold them to get the funds started for the project.

Then last night around 4am God gave me the game plan! I guess he was looking for by obedient heart to trump my need for micro-managing. Give me another week to sort out details and logistics but I would love to give you all the opportunity to jump in on this one!

As I went through our possessions to find items to sell I was almost disgusted at how many unnecessary things we have. I thought about our homeless friends and the looks on their faces if they were to see how much useless stuff we cling to. I looked at all of our medical equipment and toys and thought about how many medical moms would be thrilled to even get a single item like these.

It led me to really process how I want my children to be raised. I don’t want them focused on acquiring more things. I don’t want them to put their identity into objects. But in order to do that in today’s world I am going to have to be very intentional.

I saw this idea today and instantly fell in love with it. I figured I would share it on here in case any other moms wanted to try it out.

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A few days before Christmas these boxes go under the tree and each child fills it with quality toys they would like to pass on to someone else. I am also really giving thought to finding a service project for our family to do each Christmas day. I think it is so important that we intentionally model and teach our children to have the heart of Christ and look for ways to be different than the world, like the Bible calls us to do. What’s more different than the world then taking a day focused on “me me me” and finding ways to focus it on others.

I feel like I am all over the map tonight. I know I blame sleep deprivation a lot so let’s go with that excuse again haha.

I can tell you all this…God is working on my heart in many ways. I feel it. He is challenging me, calling me, and instilling a new healthy empathy within me.

I am so grateful that God is allowing my heart to break for others. It is so easy for me to get caught up in my own difficult world and use it as an excuse to close my eyes to those suffering around me. May we never become so established in this world that we don’t seek to bring light into the dark places.

Happy Thanksgiving y’all!

Leah

 

 

Lock Eyes With Contentment

Levi is officially two years old! Take a few seconds to listen to him tell you himself:

We can’t believe how much he has changed in just one year- it is almost unbelievable.

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It seems silly to celebrate a two year old’s birthday seeing as he doesn’t even know what a birthday is, but I did want to make his day extra special with the hopes it would distract me from strolling down memory lane and allowing the negative emotions surrounding his birth to come back. I made it the whole day without shedding a tear which is truly a praise report.

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Levi must have been extra pumped about his big day and woke up wide eyed at 3am. He was loud enough that soon after he also woke up Malachi. They were both playing and having a grand ol’ time up until abut 6:30 when I made them both lay back down.

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For dinner we went out to get Levi some birthday queso, one of his favorite treats. Then I took him into Target and let him pick out a new stuffed animal, a job he took very seriously. He settled on a fluffy elephant and hasn’t let it go since.

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We had a few small gifts for him.

Bubbles

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A microphone

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Refrigerator magnets to try to distract him from the actual fridge. And a fine motor porcupine to help with those skills.

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We are pretty low key about birthdays and holidays around here.

Both of the boys did so wonderful at their therapy sessions this week!

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We made the decision to keep Malachi home from school this week. The flu and strep has been floating around his school and if it ever hits his classroom they let me know and allow us to make a decision on sending him. So both boys got to tag along to work with mommy this week. Levi is getting to be a little too much to handle in the office, coming up with ways to entertain himself when he is bored. I took this photo very quickly for Jake so he could see the antics Levi has been up to lately. I know I shared a similar one with you all last week, but his confidence level is continuing to grow.

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Malachi has always been into watching (well, listening to) cartoons but recently he has been starting to show interest in movies and plot lines. I brought our portable DVD player to work with me so he could try out a few movies- Peter Pan and Mary Poppins. The more singing the better, and he has really been actively listening to them!

He is such an amazingly neat kid. I wish each of you could get the chance to know him and see how awesome he is. This week he has been VERY into picking out what he wears each day. I got him some much needed new shirts in his size and most of them have dinosaurs doing various things on them. He loves when I give him options to choose from.

His seizures are still being well controlled with the new medication change, and he is only having 1-2 medium ones each day! Sleep is still pretty limited- he is going to bed around midnight each night and waking up at 4:14am. I am sometimes able to get him back to sleep around 6:30 for an hour or two until the wild Levi wakes up all up.

On Tuesday we hosted the soccer banquet for our girls team. We try very hard to take the time to honor each girl and really enjoy speaking life into them. Here is a photo with one of our favorites, who sadly (for us) is graduating this year. I know her daddy and aunt read the blog religiously so I know they won’t mind me sharing her beautiful face with you all.

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Jake and I spent a long time talking about coaching soccer this week. It is one of the extracurriculars that we do that isn’t directly pointing to God, but as we talked we could speak about God moment after God moment where we have been able to plant seeds of the gospel with the teens. Although coaching is an enormous amount of work for our family, we still feel like we are doing what God is calling us to do. To make an impact in the world you have to be willing to spend meaningful time and build meaningful relationships with the lost. Soccer gives us that opportunity.

Speaking of teenagers, holy moley y’all! Our Sunday night home Bible studies have been growing, and we are now up to 35-40 middle school, high school, and college aged kids at the house. I am still cooking dinner for them each week, which is a marathon but oddly a lot of fun. Tonight we did fettuccine Alfredo, ham/turkey sliders, cheeseburger dip, pizza rolls (a weekly staple), and peach and cherry cobblers. It requires a lot of multi-tasking a lot of careful planning with the grocery ad, building the menu around all of the buy one get one free items that week. We have been going chapter by chapter through different books of the Bible and the conversations have been so great!

Yesterday the women’s group at our church went on an adventure to a small town about an hour away to do some shopping. The shops were all on one strip through the center of town, and all unique non-chain stores with one of a kind treasures. It was an all day adventure that went from 8am-4:30pm so I don’t often choose to go on these as it is hard on Jake. But they needed someone to drive the church bus so I used that as my justification to myself for going haha.

I started out with a small group of them but ended up breaking off and walking the strip by myself, glancing through shops along the way. It felt so odd yet so refreshing to be alone. It felt good to be anonymous, and not the mom pushing the wheelchair. I laughed to myself in every single store, marking each one as “non-handicap accessible” and just imagined the thought of trying to bring Malachi’s wheelchair into the narrow, jam packed stores there. Then I laughed even harder thinking about Levi and the ticking time bomb he would be around all the glass valuables.

It was such a relaxing getaway.

I didn’t really need anything in particular and we don’t exchange Christmas gifts with outside family and friends, or even each other so I wasn’t really watching for anything. But when I saw this throw pillow I knew I needed it in my line of vision each day.

Just in case you can’t read it, it says: “God didn’t promise days without pain, laughter without sorrow, nor sun without rain. But He did promise strength for the day, comfort for the tears, and light for the way.”

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I know I have told you this before, but contentment is an emotion you have to choose to take hold of. If you truly desire it, you can find contentment in each and every situation God brings you into. But in order to truly grasp that contentment you have to lock eyes with it and now allow yourself to look to the left or the right.

Since this is such a struggle for me I made the decision to cover the walls of our new home with scripture and things with a godly focus. That way anytime I start to let my focus stray I am able to quickly remind myself of the blessings that we have been given. I need my life and my soul to be saturated in the words of God and the promises He has spoken to us as His children.

Someone wrote me a brief message on Facebook this week that humbled me greatly. This particular momma had lost her son last year and she never got the chance to be the medical momma that her son’s diagnosis would have required. Here is a portion of what she shared: “Seeing you and your boys, the honest way you write about the blood sweat and tears, the truth you reveal about how difficult it is but possible with God…It is priceless for me. I miss my boy and wish every day that God had planned for me to be a special mama like you. Seeing how wonderful you are with those boys in spite of , and through, the immense struggles…it helps restore a tiny piece of the brokenness within my soul. Somehow reading what all you go through helps me feel closer to my son. I imagine I’d have experienced many of the same trials.”

This message rocked my world. I don’t know that I can justly explain the many reminders God gave me through this small note, but it was like He peeled off a clouded layer from my eyes and help me see that some looking into our lives see the pain and struggles yet still desire for a chance at our world.

Have you ever stopped to realize that your trials could have been someone else’s blessings?

That hospital stay you had with your child….but then you came home. Some moms don’t get to say that.

That seizure that lasted four minutes…but he snapped out of it. For some children that moment could mean death.

That surgery or treatment that you had to endure…but there was a fix for your issue. Some parents don’t have that blessing.

What a powerful reminder that the journey that each of us have been assigned can be a source of light for others traveling similar paths, even when we feel like our days couldn’t be darker. And, oh my, how the blessings are often hidden in plain sight.

This week I have been thanking God for even the dark days as I remember that I could have missed this life. I could have buried these children and never been given the chance to know them. So instead of wallowing in pity at our sleep deprived 3am play times I should embrace those moments, recognizing how truly blessed I am.

It is all about what we choose to focus on.

Much love,

Leah

 

If It’s the Lord’s Will

We all have them…those things on our to-do list that we really truly don’t want to get to. Week after week they get pushed further down on the list as you try to wish them away. I accumulate several of those “things” on my list and this week I decided to try to tackle a few of them.

I spent hours this week on the phone with medical supply companies, insurance, doctors, and pharmacies trying to shorten that list. It truly is a mind game trying to deal with many of these companies and the psychological effects of hours of hold music is pretty intense. But each time you get to put that sharpie maker line through the list it brings such a rewarding adrenaline rush.

Yep, I am officially a weirdo medical mama haha!

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The boys have had a great week. We tackled a myriad of appointments as well as some added on social activities. My mother had a birthday this week so we celebrated with my brother (who lives locally) on Friday night. He has several dogs and Malachi’s face lighting up with those pups made me realize how much he misses his dogs.

For new readers to the blog, Jake and I had two lovable dogs when Malachi was born. Right before we moved out of our cabin in 2016 we lost one of the dogs to a heart attack. Our other dog went to Ohio to stay with my in-laws while we were living in the Ronald McDonald House in Cincinnati. Sadly, we never go to see him again as he too passed away a few months ago. We really wanted to bring him back to Tennessee but couldn’t justify it at the time with Levi being hooked to so many wires that were susceptible to being pulled out/off of him.

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Malachi loves animals but he really loved his dogs. This weekend planted the seed in my head of getting him another dog in the near future, and possibly even looking into a service dog that could help is detect his seizures particularly at night. I don’t think we are ready for that quite yet but maybe in the future.

Malachi’s quality of life is priority number one for our family and by golly if that means we get that boy a dog then I want to be able to do that for him.

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I had the opportunity to speak to a speech/pathology class at a local college on Tuesday afternoon and share the boys testimonies and medical histories. I love opportunities like these as I hope I can share a parental side of the world they are about to enter that textbooks may not provide. They asked a lot of great questions about the boys.

Levi got some new shoes this week. Can you spot the irony…

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Malachi has a big exciting event coming up! Our small town has decided to set up a giant Christmas tree by the courthouse and they have asked Malachi to be their “grand marshal” and be the one who lights the Christmas tree. I told Malachi about it and he went wild with excitement that they were going to clap and cheer for him. He loves attention and I can’t wait to let him spend a minute in the spotlight. Levi takes so much of our focus and I often feel like Malachi gets overlooked. It is special that this gets to be just for him to do.

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Levi has been a complete train wreck in my office during the week. If he isn’t climbing on the walls he is finding things to dump out all over the floor. It is a mix of exasperating and exciting that we have such typical behaviors in our son. When you have a child that can’t get his body to cooperate with his brain it really changes your perspective when another child does those things.

Here is a video of the mess he made when I stepped out to the bathroom for a minute:

The boys got some early Christmas presents from their grandparents, Malachi getting some new Disney movies to watch and Levi getting some really neat g-tube friendly clothes from a new adaptive line at Target. I took a photo to show you how the clothes work. So cool!

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Levi is still very eager to include Malachi in his games and imagination, this week making sure they both could sing karaoke together.

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If their sweet relationship doesn’t bring a smile to your face then you are a robot haha.

Jake and I are still having the youth group come over to the house on Sunday evenings, hence the later than normal blogs! The group is continuing to grow and we are up to between 35-40 teens at the house each week. We feed them all dinner so I usually start cooking around 2:00 for their 6:30 arrival and the last one leaves between 10:30-11:00. Our Sunday evenings have become a marathon but both Jake and I feel so strongly that this is what God wants us to be doing right now.

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Logistically getting all those teens in our modest house has been a challenge. We successfully tracked down enough seating and space for 30 but as the group grows we have to be more creative so I started looking for a better kitchen table.

Back when we sold our cabin and started the building process we shopped for a new dining room table. Everything we choose to get for the house has to fit our situation perfectly. We took Malachi in his wheelchair and tried him at many different tables, trying to find the best fit for his chair. We found the perfect table that has cafeteria style benches that swing out leaving room for his chair to slide in, but it was $800. I couldn’t justify spending that much on a piece of furniture that would likely take a wheelchair beating and have the scars to prove it.

Fast forward to this week. As I started my search for a table to help increase seating for our youth nights I found the exact table we fell in love with years before. The man selling it had purchased it six months ago and was selling it for nearly a third of the purchase price and was willing to deliver.

I know it sounds like a stretch but it is in moments like these where I am reminded that my God is a God of details. We tried out the table this week with the group and it made such a difference! And Malachi loves it too so it is a win-win.

On Sunday nights I have been studying the book of James with the girls. Tonight we went through James 4 which has a very familiar verse inside of it:

13 Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14 Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15 Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

I explained to them that at some point in their lives this verse is going to come to life for them. It will grow legs and take on a brand new meaning. There will be a day that they wake up with their plans made but something will go terribly wrong and all of those plans will be meaningless as you struggle to grasp what just happened.

Some of you are probably nodding right now as you reflect on a day your world got turned upside-down.

Obviously for me there are several of these gut wrenching moments…truthfully too many to count. But the biggest ones being the nights that each of my boys were born. Each day started out with a plan in place that had nothing to do with birthing a child. And each day ended with a fresh c-section scar and a baby in a NICU.

There are so many variables in this world that we can’t control. But we like to ignore that fact and assume that we can dictate our path and steer the will of God in the direction that we want.

We spend too much time making plans and trying to make them happen; in reality, we need to be spending more time finding contentment in the will that God has for our lives.

When we read those verses we automatically assume that the command to stop worrying is for our own mental health. But this request from God for our unconditional blind faith is meant to concrete our relationship with Him. He is asking us to let go of our plans and hold His hand while we allow Him to lead us.

There is so much freedom to not worrying about tomorrow.

I say all that, and I bet you $100 I will worry about tomorrow in the next hour as I lay my head on the pillow. It’s an addicting habit that is hard to shake. But God doesn’t expect perfection, He simply wants our heartfelt and persistent effort.

Please be in prayer for Jake and I this week as we combat worry. We have been having a lot of conversations about upcoming tests and procedures for the boys in December and those conversations breed worry. Pray with us that we find contentment in the will of God.

Much love,

Leah

Trust & Obey

Highlights from this week!

The boys painted a massive pumpkin together. Malachi loved the painting part and Levi loved sneaking licks of the paintbrush when mommy wasn’t paying attention. Malachi really gets into art and craft style things and loves the sensory input it gives.

As much as I hate to say it, I think Levi is a sensory kid. I know that is a foreign lingo for some of you so I will explain. Levi has a very hard time dealing with certain materials or situations in which he encounters something he isn’t used to feeling. For example, he can’t physically touch certain foods and certain sounds continually send him into a frenzy.

There is a formal disorder called Sensory Processing Disorder that is defined “a condition in which the brain has trouble receiving and responding to information that comes through the senses.” I don’t know if Levi falls into the formal diagnosis and frankly I am not chasing another acronym for his medical sheet, but it is something I try to keep in mind throughout our day. We try to integrate sensory input into as much as we can to help him.

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Levi has an imagination that blows me away. I always thought you had to teach your child to pretend, but Levi’s imagination is impressively innate.

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Here is he pretending that his french bread pizza is a phone. He was calling his dad even though Jake was sitting right next to him. He usually hands me the “phone” and then gets really mad when I don’t say the right things.

Levi is also impressively helpful these days. He is following two step requests without hesitation and he is genuinely helping me so much. I can hand point to something on the floor of one side of the house and ask him to take it to his laundry hamper and he will go across the house and do it. Or I will ask him to pick up his toys and take them to the play room and he will do it! Kids are super cool.

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There are certain weeks where this special needs mom gig seems easy and natural. Then there are weeks where focusing on the positives is a true challenge. SO much of my day is a mental challenge, trying to convince myself that “I’ve got this!” or “things will be easier tomorrow.”

This week those reality checks kept hitting me in the gut, punch after punch, until I finally admitted what I stuff down inside and don’t verbalize often…this life can be rough!

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Levi stopped sleeping through the night this week. He has been waking up around 5am, and Malachi is locked into 3:15am. I work for hours trying to get both of them to go back to sleep, and can usually succeed with one but not both. The sleep deprivation is a real concern for all of us; I worry about their development if they aren’t sleeping. I am really hoping that the time change will be a good reset for my crew.

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On Monday afternoon we went down to Chattanooga to have some adjustments done on Malachi’s ankle foot orthotics (AFOs). He has grown a lot over the last year and was getting some pressure sores on his ankles from his braces. These appointments don’t usually take long; they just heat up and re-mold his braces in the pressure areas.

For some reason when we walked into the building Malachi started sobbing. It was a shoulder heaving, struggling to breathe cry which doesn’t happen very often with him. I tried to quickly assess what might be going on, making sure I hadn’t pinched him accidentally in his chair and I narrowed it down to a possible tummy ache. I picked him up and put him in my lap to comfort him by singing in his ear and Levi either developed some serious empathy or some serious jealousy, as he too started sobbing uncontrollably. He got so worked up he started to gag and nearly vomited, his face turning colors from all the energy he was using to cry. He wanted to be in my lap too but the support Malachi’s body requires makes that impossible.

So here I was in downtown Chattanooga alone with both boys screaming and clinging to me for no apparent reason. And then the looks of pity came. Pity is an odd thing. Sometimes when I look in the mirror I look back at myself with eyes of pity. But when it comes from others, that is a little harder for me to accept. Maybe it is my pride, maybe it is my protective momma instincts…but the pity looks always get to me.

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It was one of those moments where I really truly wanted to join in their crying, but doing so would absolutely deplete what little energy I have left so I did the best I could to comfort them until everyone recovered. I focused hard on fighting back my own tears…once that floodgate opens I can’t easily turn it off.

Tuesday was our therapy day and I fought back tears again all day. My mind kept flashing back to conversations with Malachi’s therapists when I was pregnant with Levi stating “It will be so odd to have a child that doesn’t have to be at the doctor and therapy office all the time!” But now I have to devote an entire day to therapies for both boys.

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I desperately want to live in a Peter Pan world where I can just imagine that my boys are healthy and strong. A world where their medical issues don’t exist and all they have to focus on in life is being a carefree kid and me being a mom.

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When these thoughts take over I talk to Malachi a lot about heaven. I tell him about all the things he will get to do there…I tell him I am going to chase him but never be able to catch him because he will be able to run so fast! I tell him how Levi and him will be climbing the tallest trees and I will be yelling anxiously after them to be careful (even though it is heaven and tragedies wont exist haha). I tell him one of the things I look forward to the most is seeing him run towards me and wrapping me in a big hug.

When we have talks like this Malachi clings to every word and giggles at the funny parts. He loves to talk about heaven! And it helps me deal with my earthly grief.

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I am absolutely confident that a huge factor in my wayward emotions lately is the fact that Levi is about to turn two years old on the 14th. The birthdays of my boys were both uniquely challenging and my heart hurts when I allow myself to remember each of their births. I do not purposefully focus on those memories, but small things trigger those thoughts.

We went up on Malachi’s CBD oil this week and are seeing some great improvements in his cognitive rate. So much so that other people that don’t know him well are noticing it. The small increase (0.2mls) has also eliminated some daily seizures. There was a day this week that he didn’t have a single seizure that we saw! That is probably the first time that has ever happened.

I am having so much fun dressing these brothers alike. We have decent wardrobes for each boy thanks to generous hand me downs. This week we bought Levi some new shoes, which have to cover his ankle to help him with stability. It was my first experience of true shoe shopping with an opinionated kid and it was quite the adventure. Shoe stores have a whole lot of boxes that apparently need to be reorganized by a toddler.

Levi’s ankles are definitely getting stronger though! This week he mastered climbing his slide and says “I did it!” when he gets to the top. Here is a video:

Earlier this week I saw a photo on Facebook that fascinated me initially then it started to consume my thoughts. It is a photo of a dissected airway of a child who passed away from choking on a peanut. You can actually see the peanut lodged in blocking the air flow.

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As I went throughout the week I thought long and hard about this photo and thought about Levi. If a typical child can die from something as small as a peanut what could happen to my sweet Levi who can’t close his vocal cords and protect his airway. Levi loves food but can’t really eat any large quantities- each bite has to be smaller than my pinky nail. My goal is to get him off of his feeding tube eventually but think about how many tiny bites he would require to actually be full.

I am so proud of the progress he has been making with the types of foods he will eat, but this week I have been so discouraged that while the food experience is fun for him, will we ever actually advance with it? Will Levi be a teenager and still having to cut his food into minuscule pieces?

If I am not very very careful I catch myself mourning over things that have yet to be. It is so wild how dangerous worrying can be to your mental health. Thoughts can so easily consume you and literally change your emotional attitude.

I feel like this blog has been a doom and gloom one unintentionally. Let’s end on some good stuff!

Jake and I have learned over the last six years that we have to give our financial situation over to God. We literally accrue hundreds of thousands of dollars in medical bills each year, some years breaching into the millions. We are very frugal in a lot of ways and don’t believe in having any debt aside from our home. If we can’t afford to pay cash for it, we don’t get it, plain and simple.

Our finances could easily become a worry for us and consume our thoughts, adding just one more stressor to the list. But God has sustained us in ways that a simple blog post can’t even convey.

We have learned to be very sensitive to the leading of God, even when it doesn’t make sense. This week we made several purchases that we felt God leading us to make for others. Things that “on paper” we couldn’t afford to do. On the way home from making those purchases we went out to the local mexican restaurant and met Jake for a 3pm dinner- random, I know. There were two other families in the restaurant whom we had never met or spoken to.

We went to go pay and learned that one of them had purchased our meal, and the other met us in the parking lot and explained that he felt led to give us some money, handing us a significant amount of money. Interestingly enough, the amount needed to cover our purchases for others a few hours before.

God continually takes care of our family in beautiful ways, but he also expects us to be faithful in our obedience to his leading. Jake and I have each had some different callings on our hearts lately that we are working on seeing through. I am feeling led to do another outreach to the ICU moms at our hospital for Christmas so more info on that to come!

Jake has been visiting a homeless tent community in Chattanooga with a few friends from church and he has been working to meet their physical needs before winter fully hits. They made a trip out there yesterday and had the chance to share the word of God with the group as well as bring some tangible needs.

As we prepped for his visit we went through our closets gathering warm things to take. I caught myself viewing things with the mind of “What do we no longer wear.” But as I looked at our four winter coats EACH I rolled my eyes at my innate selfishness and we picked out the best and warmest to pass on to them. How often do we disguise our generosity as an easy way to get rid of useless stuff or junk. Is that really the heart God calls us to help people with?

All this to say, God doesn’t require our money or our expertise in an area. He simply asks for our obedience. We often fret about the details of things when in reality God will go before us and figure out those details.

I think about the Israelites wandering in the desert after leaving Egypt. God literally dropped food from the sky for them and brought forth water from a rock multiple times. When you are walking in His will He will continually provide what you need.

Deuteronomy 2:7. “For the LORD your God has blessed you in all that you have done; He has known your wanderings through this great wilderness. These forty years the LORD your God has been with you; you have not lacked a thing.”

May our eyes always see the ways that God continually provides for our family; and not allow it to become a privilege instead of a undeserved blessing.

God Bless,

Leah

 

Deacon Jake

Let’s start with a funny game. What is wrong with this picture? I am pretty confident you will be able to spot it, but just in case I will put the answer in the P.S. comments at the bottom.

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There are times when my heart feels so full of love and joy, and tonight is one of those nights. As I look at each of my uniquely special boys my heart flutters with the honor of getting to do life with them.

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Malachi has the most forgiving heart. This week he and I have been very frustrated with each other. When he was younger and I would get frustrated I could yell out and release some of that built up anger and Malachi would laugh at my outburst. Now when I yell out in frustration he yells out back angrily and makes sure I know he is mad too. But his sweet little heart can’t stay mad long.

Malachi has a streak of silliness in him that is coming out more frequently these days. He loves to make people laugh and desperately wants to connect with people around him. He is really enjoying school and the independence it gives him away from mom and little brother. He has been able to do school 3-4 days a week from 9:45-2:30 each day! That is a huge improvement from the 2-3 hour chunks we had to do last year without his feeding tube.

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His seizures are down to about two a day and tomorrow we will be increasing his CBD oil to the max dose we are willing to try right now in an effort to take him down to one seizure or less per day.

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Levi has transformed his personality in an unbelievable way over the last 12 months. This time last year he would cry if a stranger looked at him, let alone spoke to him. Now he wants to lead them by the hand all around the grocery store. He is extremely intelligent and has such an awareness of things. He is investigative and won’t move on from something until he has mastered it. He loves to help and can now complete two step instructions, which I take advantage of often when I am trying to take care of Malachi and need a second set of hands.

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And Levi loves his brother so fiercely. To him, Malachi is simply Malachi. He doesn’t see anything different about him. Today I looked over at lunch and they were holding hands, something Levi initiated. Whenever he walks by Malachi at the house he takes time to stop and kiss him on the head or hug him before he continues waddling by.

This is his silly face he makes when he knows he is doing something he shouldn’t do, like stand up in the moving wagon.

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He is also becoming quite the little flirt with the church girls.

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This week has been a wacky one with crazy sleep schedules. On Tuesday we made the trip to the regional semi-finals game with our soccer team where we lost in a sudden death PK shootout. We didn’t get home that night until after midnight and didn’t get everyone medicated and in bed until 2am. That set their sleeping schedules into a whirlwind for the rest of the week, Malachi partying until after midnight some nights. It also seems that he is establishing his new wake up time earlier than before at 3am. I am hoping the CBD increase may help with this.

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Tonight was a special day for our family as Jake was ordained as a deacon in our church. Jake was honored in an ordination service this evening and it was so wonderful to see the other deacons in our congregation welcome him in and pray over him.

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If you aren’t familiar with the Bible and all these church terms, “deacon” means to minister and to serve. There are only about a dozen deacons in our church, and Jake has decided that this is where the Lord is calling him. Jake’s heart has been pulled in the direction of service other the last few years and I think a role like this will continue him on that path.

During the service this evening the pastor made a reference to the story of Jesus feeding the 5,000. In that story, the people have been following Jesus and the disciples and now there is a huge crowd of them. As the day wears on, Jesus recognizes their need for a meal and the disciples start to try to think of ways to feed the crowd.

One of the disciples finds a young boy that has a sack lunch with him that contains 5 loaves and two tiny fish.  And then the miracle happens…Jesus feeds the 5,000 with it!

I have heard this story so many times in my life. It is in four different books of the Bible and I have even studied it within each book with the youth. But tonight God pointed me at something fresh and new He wanted to me to see. He pointed me towards the actions of the boy.

That boy was surrounded by at least 5,000 very hungry people that day and was the only one with a sack lunch (high five to that boy’s momma!) He very easily could have taken his meager lunch around the corner and eat it quickly and quietly under a tree, making certain that his physical needs were being met. He could have done the cautious thing and given just a portion of his lunch.

But instead he willingly gave all that he had. He did so with expectation that Jesus would do something miraculous. He showed faith. He showed the heart of a servant that we are called to cultivate in our own lives.

When was the last time we willingly gave ALL that we have to Christ? We are good at giving meager portions to God, or the chunks in our lives that are leftover when we are through with what we want.

But when was the last time you carried everything up to the feet of Christ and laid it down, expecting Him to multiply what little you have to offer to impact His kingdom?

When was the last time you looked around and saw a need and saw a tiny way to possibly help meet the needs of others.

When was the last time you had the faith of that small boy? How many times has our selfishness gotten in the way of God’s work?

Christ loves to work with mold-able, willing hearts that are eager to see Him in action. Release your 100% to God, regardless of what that may look like to you. For some of us that may be time, for others resources, and others emotions. Take all that you have in those areas and give them over to God and wait patiently to see how He multiplies your meager rations.

I like to think about the smile on that little boy’s face as the disciples likely filled up his bucket to the brim with leftovers from the day. What a story that boy had to tell to his future generations.

What story of God’s goodness do you have to pass on?

Thank you for your prayers for more miracles for the boys!

Leah

P.S. Jake is a school teacher and doesn’t get dressed up often. Since tonight was a special occasion he decided to bring out his fancy shoes. When he bent down and kneeled his shoes both slipped right off of the soles!! I didn’t even know that was possible. He limped through the rest of the evening, finally breaking off in the parking lot at dinner. Time for some new dress shoes I guess haha!

 

Blessed Be the Name

Brace yourself…I have an illogical amount of photos to share from our busy week.

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Jake had the week off for fall break (yes, a wonderful week off that southerners invented) so we did our best to be intentional about using the time wisely. It is so easy to justify NOT doing things when you have children with complex needs. On a pros and cons list we are always heavy on the cons. But we can’t just talk about wanting to give them a typical life- we have to be willing to actually do it.

And almost as if we needed another push in the right direction, 4 of our 6 appointments for the week cancelled on us leaving us with some rare wide open chunks of time.

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On Monday we made a trip down to Chattanooga to go to the zoo. It is a small zoo but perfectly suited to our needs. Levi hasn’t always handled the zoo well and this trip was no exception. Malachi was ecstatic about going and especially about seeing the jaguars.

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Right next to the zoo is a massive handicap accessible playground so we took the boys over to check it out. Levi had never been on a playground before (germaphobe momma) and he loved every second of it. We were reminded that he knows no danger and is still learning the whole concept of cause and effect.

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On Tuesday we hosted the first round of the tournament for the district championship. Our girls were able to snag the win!

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On Wednesday we took the youth group out to a local campground for some tin foil dinners and flashlight tag. Malachi and Levi love spending time with the big kids!

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Thursday was our busy day and started with a trip to the aquarium at Malachi’s request. His eyesight is improving so much and it was exciting to watch him track the fish. He tried hard to catch a glimpse of every creature that came close. Thankfully the otters, sharks, and penguins all got very close to him and swam right within his line of vision.

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Again, Levi was not a fan.

Malachi also got to pet a snake! He waited patiently for his turn as the woman discussed the type of snake and different facts about it. He clung to every word, his eyes wide with wonder. He is such an intelligent kid, I wish you could see how well he handles receptive communication.

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On Thursday night we took our soccer team to their district championship game. The game went into overtime and finally had to go to sudden death penalty kicks. Unfortunately we fell short earning 2nd in the district but we  still have a chance to earn Regional champions. On Tuesday we will travel 2.5 hours (close to the border of Kentucky) to play our first round of the regional tournament.

And then there was Friday! I still had to work on Monday, Wednesday, and Friday this week so we did our best to cram these adventures around my work hours. Friday afternoon we took the boys to the pumpkin patch, which proved to be their favorite adventure of the week!

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Malachi jumped with his daddy on a trampoline style pad and I took a short video to share with you:

Levi soaked it all in and even got to eat some hay before daddy caught him.

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They each picked out a pumpkin which we will be painting soon.

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And we all four rode the cow train which was an interesting endeavor.

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The week was refreshing for us as a family. Sometimes we just need to pretend we are typical, and that is what we really tried to do this week. It is so important for us to create these opportunities for Malachi, knowing that we may not be able to do all these fun things as easily the larger he gets. The photo on the left was from 2017 when I was very pregnant with Levi. You can visibly see how long his legs have grown!

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With less appointments this week we spent a lot more time around the house. I love watching Levi play with Malachi. Their love is so special. Earlier today I was cooking for the youth group and things were suspiciously quiet so I went on a hunt to find Levi. I peeked over the couch to see him sitting on Malachi’s lap and leaning down to give him a  kiss. Their bond is so special.

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Sunday nights have changed dramatically now that we are holding youth group here at the house. I start cooking around 2:30p and the kids come at 6:30 and stay sometimes until 10:00! We get our two to bed and I start writing the blog. I typically finish typing it around 12:30a and then head to bed myself for a few hours of sleep before Malachi wakes up.

Last Sunday night Malachi just couldn’t seem to get comfortable in his bed. He squirmed and wiggled all night long and I checked on him over the monitor what felt like hundreds of times. Levi also has had something GI going on and we have had to fiddle with his feedings, especially at night so he doesn’t throw everything up. Needless to say, it was an up and down night.

Right before I closed my eyes that night I read a post in one of my Facebook support groups about one of the warriors passing away. When that happens in our online community it is always a shock and a blow, as we can all relate to the situation with our own fighters.

This one hit me exceptionally hard though because you could tell by the young boys photo that he was not nearly as severe as Malachi. I read through the comments and found one where a brave momma asked the boy’s mom how he had passed (a question we are all asking but one we don’t want to verbalize). She was very gracious and explained that it was a freak accident. He had fallen out of his bed and his mouth was too close to the side of the mattress causing him to suffocate.

I prayed for that family as I drifted off to sleep, not even being able to imagine what their hearts must be going through.

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Little did I know that on that very night we too would have a scare of our own with Malachi. I posted this to my Facebook page and it just seems appropriate to share it here as well:

It makes me sick to my stomach to even type this, but I just feel like I need to speak it. We almost lost Malachi early Monday morning while we slept.

I recently moved Malachi from our bed back into his room where he has a special mattress that helps keep him in a proper position while he sleeps. We have a baby monitor on him that stays inches from my face every night, one that I obsessively check while he sleeps. I wake up and check the monitor for Malachi and check to make sure Levi (sleeping in a crib next to me) hasn’t gotten any cords wrapped around his neck…something that happens more often than I care to share. I also run my hand over Levi’s belly so I can tell if his tube has been pulled out or burst while he sleeps. I literally do these “rounds” at least 8 times a night.

When I tuck Malachi in at night I have a weighted blanket that we strategically wrap around his lower legs to keep him from contorting his body while he sleeps. Both of his hips are dislocated as are his knees so he doesn’t bend his legs. But he does fold at the waist and fling his pencil straight legs up which causes him to wake up…the weighted blanket helps prevent this.

Malachi usually wakes up around 4am but for some reason he stayed asleep that night. I sleep in a twilight sleep and jump anytime I hear either boy move and around 6:30 I woke up to a very faint noise. I glanced in the monitor and at first it looked like Malachi wasn’t in the bed, but then I saw a tiny movement and realized that he had the weighted blanket up over his face, covering his entire body and head. I am baffled as to how this happened as we are so safety conscious with that blanket and setup.

I ran to his room and grabbed it off of his face and he took a big gasp of air which sent chills down my spine. I snatched him up and held him close and asked him if he was scared and he signed with his mouth that yes he was, which shattered my heart.

Had I not that faint gasp for air over the monitor things could have turned out very differently. He lacks the ability to grab things and I don’t think he is strong enough to push a blanket off successfully. Asphyxiation has always been my biggest fear with him.

All day I haven’t been able to get this incident out of my mind. I keep replaying that visual on the monitor and that sound of his gasp over and over in my head. The guilt is overwhelming and such a heavy cloud on me right now. Last night I couldn’t sleep and instead just watched him, that sick feeling in the pit of my stomach.

Sweet Malachi is so forgiving and has recovered from the incident just fine. But I can’t shake it. Being a special needs mom has a unique set of challenges but knowing that his delicate life rests in my hands is terrifying. There are so many horror stories like this one that didn’t end well- things that could have been prevented with just one tiny change in a routine.

Today I have hugged Malachi and covered him with kisses. I have thrown out that stupid blanket. And I have promised him that I will never make that mistake again.

But I have also prayed over his death. I have prayed that Malachi will always feel loved, safe, and comfortable. That he will never again need to feel the fear and helplessness he experienced this morning. I have prayed that when God carries him to heaven for his complete healing that He will do so in a painless, beautiful way.

This is the special needs mom life. We beg God for life for our children, yet also pray fervently over their death. I never knew a world like this one existed. A world full of so much beauty yet so much sorrow. A world where you are reminded again and again that your child has been entrusted to you for an undefined amount of time. That unknown timeline for their lives can drown you if you let it.

Tonight say a prayer with me for the special needs momma. Pray that the guilt and fear that the devil likes to plant in our hearts would wither and die. Pray for boldness and courage as we fight alongside our warrior children. We can’t afford to be meek. And pray for peace for our weary and worried hearts as this battle can get exhausting.

Needless to say, I spent the next several night watching him like a hawk instead of sleeping. It took me most of the week to get that nauseous feeling out of my stomach as I pondered the “what ifs”. The whole situation shook me to my core.

Our life with Malachi is very difficult, but it is so very special. Just knowing him for these past 6 years has transformed our lives and especially our walk with God. Biblical concepts that seemed so simple have come to life before our very eyes as we navigate the painful parts of faith.

I can’t imagine a life without him.

But I also have to remember that all that we are given in this life is not ours to claim.

The night he was born will forever be etched into my mind. There are certain details that I will never be able to unsee. But as we raced to the operating room and I watched those ceiling tiles whiz over my head I prayed the words of Job over and over again: “The Lord giveth and the Lord taketh away, blessed be the name of the Lord.”

I don’t know why those exact words came out. I just remember wanting so desperately to plead for Malachi’s life, but also wanting God to know that I trusted Him fully.

Those words have been playing in my mind this week as I think about life with Malachi. Every day that we get to spend with him is a gift from God. I pray that my heart always remembers these words and when that time does come for Malachi to claim his heavenly healing that I will be able to say with my whole heart “Blessed be the name of the Lord.”

Jake heads back to work tomorrow and our chaos resumes! This momma is headed to bed.

Much love,

Leah

 

 

Painful Roots

I had to look through my photo album to try and remember what all we crammed into this week!

We rocked out some therapy sessions. Levi has a hard time understanding when his therapy session is over and brother’s begins. He tends to get very jealous that they are working with Malachi instead of him and tries to join in on the fun.

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We went to the apple orchard with our Chick-Fil-A buddies. We don’t get to meet up very often but it is always fun to spend time with those sweet children. Both Malachi and Levi thoroughly enjoyed the hayride through the apple orchard.

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I was barely pregnant with Levi when the infamous Chick-Fil-A encounter happened which led to the viral post. So it is wild to see how much our families keep changing!

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We ate chicken in parking lots in between appointments. I know that sounds like a weird sentence. But most days we have an hour or so to kill in between appointments and getting the boys out is getting more difficult now that Levi is so mobile. So we find a quiet parking lot and I let Levi join me in the front seat to get some wiggles out and get a few bites of food.

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We all four got our flu shots! Our local pharmacy is absolutely amazing and they come out to the car for our shots so I don’t have to get Malachi’s chair out.

Levi was too young to get his at the pharmacy so we made the drive to his pediatrician in Chattanooga. This was his first ever flu shot which made me a nervous wreck- the last time he had a vaccination he went into respiratory distress and had to be put on 6 liters of oxygen. Thankfully he managed this one well.

While I am very respectful of others opinions about vaccinations, in our world it is a very black and white, life or death issue that we don’t feel like we should negotiate on. When you become a medical momma you are forced into a world where you have to choose a lesser of two evils…we have to prioritize LIFE over all else.

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Levi managed to sprain his ankle on Friday morning which led to a bonus trip to the pediatrician and x-rays. He wasn’t able to put pressure on it for a bit and would fall every few attempted steps so we were concerned he had fractured his ankle but the images showed no break! He has cried several times over the last few days and held his foot so I know it is still hurting but there isn’t much you can do for a sprain other than Tylenol.

He spent a solid day and a half walking like this on the inside of his foot, which in turn caused him to fall over frequently in pain.

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The weather is finally changing here in Tennessee and oh boy are we loving it! The fall days tend to be more overcast so Malachi can comfortably spend time outside without trying to dodge the sunlight. Look at all that eye contact!!! He is such a beautiful child.

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img_0549 Plus now the bears seem to be in hibernation making me much less nervous about letting Levi play on the front porch and in the driveway!

Malachi’s body temperature issues have leveled out but his new wake up time has yet to be determined. We were all over the map this week, some days waking up at 3am and other days waking up at 5am. We obviously are crossing our fingers for him to settle on a late hour!

Speaking of late nights, we have had several with both boys this weekend. In addition to Levi’s sprained ankle he seems to have a slight postnasal drip. Since his airway is very sensitive any drainage back in his throat makes him immediately vomit. We run him on continuous feeds for 8 hours at night and for the last two nights he has been getting up around 4am and projectile vomiting.

On Saturday I attempted a trip to the grocery store with the boys and made it down two aisles before Levi projectile vomited all over the floor. I was trying to use the cart and Malachi’s wheelchair to block the puddle while holding a vomit covered Levi. Thankfully someone in the aisle offered to go to customer service for me and they brought some cleaning supplies. Never a dull moment!

So as a back up plan we are carrying a towel everywhere we go and only feeding Levi small amounts more often than normal. There are no other signs or symptoms in any of us or Levi other than his vomiting which leads us to confidently believe it is an airway reaction and not a virus.

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Levi has started using his imagination a lot and loves pretending that everything is a phone. He always answers it “Hey Dada”and proceeds to have a pretty intense conversation. He hands the phone to me but gets very frustrated when I don’t say the right persons name who is on the “other line”. Silly boy.

Levi is developing a little attitude and it has shocked both Jake and I in a humorous way. For example, one day this week he turned to Malachi and said “I love you” then walked off. I was touched by the sweetness of the moment and said “You love Malachi?” and Levi turned around with a sassy attitude and an eye roll and replied “I just said that.”

He is also picking up some new dance moves. Here is an updated dancing video for you:

Malachi loves Levi but sometimes needs some space (totally relatable, kid). We have been putting him in his activity chair out of Levi’s reach.

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I took this silly video for you and you can just see how happy Malachi is to play with a toy all by himself:

Jake is on fall break this week and we are planning to tackle some big projects around the house. We also have some fun things planned, like painting pumpkins and maybe a trip to the zoo. Malachi has been excited all weekend about extra time with daddy!

Levi is going through a mommy stage and will scream for at least 45 minutes if I leave the house. He is afraid I will leave him if I get out of his sight so he is following me everywhere I turn. I am really hoping this week will help ease that situation as Jake will be staying home with the boys when I go to work.

I’m not going to lie here- this week has been exhausting. There were days I was running on just 3 hours of sleep and trying to whittle down a to-do list that continued to grow. On days like those it is very VERY difficult to show the light of Jesus to people. It is hard to find empathy for others when my day is so chaotic and miserable. We spend hours in waiting rooms each week, hours in the car driving to and from appointments. There is so much unpredictability and when someone adds chaos to my chaos I tend to get angry.

But I have to keep reminding myself that even in these stressful moments, God is refining me. He is bringing my impurities to the surface, the ugly parts of my character, and He desires to scrape those out of my life.

When we are a child of God we need to be okay with the uncomfortable feeling of being refined. We need to be okay with God pointing out our ugly, knowing that His goal is for us to be a reflection of Him…something we can’t do well when we smear our innate ugliness on that mirror that He wants us to be.

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Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.

I tend to forget that there is purpose in pain. I forget that in order to really, truly grow I have to develop roots that painfully work their way into the soil but concrete me into that garden of Christ. And once those roots are established I can start to bloom where He has planted me. I can start to display the beauty of the Creator.

But we also must remember that sometimes God uproots us out of our comfortable, established plot of land and tries to plant us in a new garden. Those roots have to be re-established, an uncomfortable but necessary process for us to flourish in our new God-chosen spot.

I pray that my heart always stays soft enough to be uprooted and re-planted, as many times as He requires, and count it all joy each and every time.

This momma is headed to bed! Much love to all of you.

Leah

 

 

Wings & Endurance

I haven’t done a medical update for you in quite awhile so I figured we would kick off with a few updates on each of the boys.

Levi is always the “less complicated” one so let’s start with him. His vocal cords are still very much paralyzed but right now the piece of rib in his vocal cords still seems to be allowing him to breathe safely. At night he will have a desaturation a few times a week but self recovers without me having to touch him. We still keep him hooked to his machines at night so we can keep a close watch on his oxygen levels and heart rate.

He isn’t scheduled for another Cincinnati trip/surgery until June which is amazing! He will be put under anesthesia the day after Christmas for an MRI so we can see if the spots of brain damage have changed since his last MRI. This is being ordered by his neurologist and will give us  a better picture of what impairments we might be looking at. Although he is catching up with his milestones there are several red flags that still indicate that Levi may get a cerebral palsy diagnosis due to some low tone in his legs and core. They typically don’t formally label a child with CP until after their 2nd birthday.

Levi will also have another dreaded sleep study a few days before Christmas to make sure he is still safe to sleep without oxygen. He will still have his routine specialist appointments with neurology, pulmonology, gastrentergology, and the eye doctor but at this point there are no major changes with his care in those departments. He is also getting weekly feeding therapy and physical therapy. He is down to only taking one dose of medicine a day to help control his reflux.

Levi has been fascinated with his g-tube lately which makes me a nervous wreck. He is so sneaky about it too, reaching down the front of his onesie when we aren’t looking. One of my personal goals is getting him to take enough calories by mouth to eliminate having to do any daytime feeds through his tube. We are very far from that goal, but he is making progress. He is even able to eat an entire french fry without choking which is wild!

He is trying to figure out how to run which has made life a little more interesting haha. He is one fast little rascal! And he is mastering this whole temper tantrum thing which to be honest is a bit hard to not laugh at sometimes. That boy could win an oscar award for his performances.

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Jake and I were talking today about how much chaos he has added into our lives, but how wonderfully that chaos and normalcy feels. We can’t imagine life any other way.

Like a sour patch kid, he also has a sweet side and says “I wuv you” to me unprompted at least a dozen times a day. He also pretends that everything is a phone and calls his daddy on it. This morning he was acting up in church and when I turned to get onto him he quickly folded his hands and closed his eyes to pretend like he was praying, trying to get out of whatever lecture he was about to receive.

And just in case you hadn’t already figured out that Levi is a spitting image of his daddy, here is a side by side comparison for your enjoyment:

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Malachi has been so healthy this year, which is something we are confident God has orchestrated. We haven’t had any surprise hospitalizations for him in over a year as his sicknesses have been able to be managed at home. His immune system is still a little wonky so we are still cautious around germs.

Malachi doesn’t have any surgeries or big procedures on the horizon. He has routine appointments with neurology, neurosurgery, gastroenterology, orthopedics, and dentist. Each week for he has feeding therapy, physical therapy, speech therapy, occupational therapy and hippotherapy.

Malachi is taking 7 doses of medication per day, five of those being seizure meds. After his recent neuro appointment we increased his CBD medication a bit to try to control the seizures a bit more. He is down to having about two a day, and the CBD oil increase seems to be helping decrease their severity. We still carry a rescue medication for him in case his seizures last longer than 3-5 minutes but most of his are currently lasting under a minute.

We watch Malachi very closely for any changes since he can’t verbally communicate issues to us. We have to know every detail about him so we can spot a change quickly. When the seasons change sometimes he has a hard time adjusting, so this week he has been dropping his temperatures a little too low at night (just under 97 degrees). When I get him out of bed he is ice cold and it takes at least an hour to get his body temp back to a safe spot.

We had some bloodwork done last week to check his kidney function, something that can be affected by his medications and diet. Some of his medications make him more prone to develop kidney stones so he typically has a lot of debris in his urine. All of his tests came back great though!

Since we increased Malachi’s CBD oil we are noticing him trying to visually see things more. I know I say this a lot, but just in case you are new to the blog: Malachi has something called corticol visual impairment which means his eyes are structurally fine but his brain prevents him from seeing. He has certain settings that you can tell he sees better in (like low and natural light) but he has been trying really hard to look at things this week, regardless of the setting.

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I snapped this photo earlier this week at a soccer game and it gave me chills to see him looking at me. Beautiful boy.

Malachi broke his 4:04 wake up streak PRAISE THE LORD! He seems to be settling on 5:18 but time will tell. It really is fascinating how his little brain works.

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Malachi’s school picture

Malachi’s classmates haven’t been healthy so I kept him home with me for most of the week. I work on Mondays, Wednesdays, and Fridays and obviously both boys came along. The older Levi gets the more difficult it is for me to keep him content sitting in the office. He loves sitting with Malachi and this week I caught him helping Malachi play the keyboard. He held his hand and used it to push down on the keys for Malachi. It was just so sweet.

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Levi loves to open and empty every drawer he can gets his hands on…the copier, the desk, the bookshelf…. By the time Friday rolled around I was mentally exhausted from chasing him around the office and keeping him out of dangerous situations. In an effort to keep him entertained I tracked down a used play kitchen this weekend and filled its drawers with pretend food and dishes. I am crossing my fingers and hoping this is the answer but I am little afraid to get my hopes up. Tomorrow will be the big test!

This week we are hoping to knock out flu shots for all of us. On Malachi’s first birthday he contracted the flu and we almost lost him. We spent two weeks in the ICU battling pneumonia, so for us shots are a must.

There is also a chance that we will get to see our Chick-Fil-A buddies this week at the apple orchard!

Speaking of Malachi’s viral Chick-Fil-A post, a few months ago we were contacted to do a podcast interview about the incident. We conducted the interview via phone on the way home from Cincinnati and it aired this week. Here is the link if you are new to our story and have any desire to listen: https://speaking4him.sermon.net/main/main/21460542

I know I have mentioned this before, but we recently moved our Sunday night youth Bible study from the church to our home each week. We were hoping the atmosphere change would bring more of our youth group teens out on a consistent basis. We also bribe them with lots of food haha. Side note- while it is a ton of work, it really has brought me joy to start cooking for crowds again. And it is so important that the teens know that we love them, and as silly as it sounds food seems to be their love language.

God has been multiplying the numbers each week and we are getting 25-35 teenagers out to study the word of God. GOD IS SO GOOD!

We split the group up and the guys go downstairs with Jake and the girls stay upstairs with me. A few weeks ago I felt a prompting from God that we needed to teach them how to truly study the word of God. Our modern world tries to teach them the the Bible is outdated and full of contradictions; that it isn’t reliable. But I feel so strongly that the Word of God is living and active, sharper than any two-edged sword.

So we changed gears and I give them each a printed out chapter (the message version since it is the easiest for them to understand) and a highlighter. They each read the chapter and mark anything that sticks out to them, confuses them, or pricks their spirit and then we have an open dialogue about each paragraph.

I can’t explain the joy I feel when I get to discuss scriptures with these young women and hear their unique perspectives. There is just something about studying the Bible with other believers that is so special. There is no age distinction when talking about God with another sister in Christ, but how often do we limit our spiritual conversations to people our own age?

Tonight we got to a verse that led to a discussion about the common belief: “God won’t give you anything you can’t handle.” I told the girls that this was not true and by their reactions you would have thought that I slapped their mommas.

They were confident that there was a verse in the Bible that said this very phrase, but the closest verse is found in 1 Corinthians where it says that God will not allow us to be tempted beyond what we can bear without an escape already in place.

They told me that believing this phrase had always brought them comfort and when they are faced with something big and say this quote and it gives them the courage to embrace it head on.

I explained that while that mindset works for them in most situations now, there is going to be a moment in their lives where something comes along that they can’t handle on their own. Even the biggest dose of courage and wishful thinking won’t help them overcome it.

At some point in our lives we will all experience true helplessness. A moment where you feel like you are drowning and there is no foreseeable backup plan to turn to.  There will be a moment in your life where your only option is to lift your hands to God and call upon His name.

When we believe that God won’t give us anything we can’t handle we accept this master/slave view of God rather than seeing the potential for a true RELATIONSHIP with the Father. God wants to DO life WITH us. Not just write out a chore chart and check the list for completion.

While God doesn’t rejoice over our brokenness, He loves to meet us there as we rest in His embrace.

So yes, we will be given things that we can’t handle. There will be things in your life that are too much for you to process, too much to physically take on, too much to bear.

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

But did you catch those early words: “But those who hope in the Lord…”

When we are faced with a hopeless situation beyond what we can “handle” we are called to put our hope in the Lord and expect Him to give us wings to fly and endurance to complete the journey.

We have seen this firsthand on our parenting journey. We have watched God sustain us physically, mentally, financially when we have been stretched beyond what we can bear. We have watched Him preserve our marriage and allow Jake and I to be one mind and one soul.

We have been broken, but God has always met us in our brokenness. He has been our rescuer, our redeemer.

So my challenge this week is for us all to stop letting our pride get in the way of our relationship with God. What in your life has become too much for you to handle? Instead of repeating the lie over and over again that you can handle it alone, why don’t you try taking the road block to God?

Instead of seeing your inability to fix something as a negative, start to see it as the beautiful thing that draws you closer to the Lord.

God bless you all this week and thank you for checking in on our family.

Leah

 

 

 

The Throne Room

Let’s start off with a video that I keep watching over and over again in amazement…right before I started filming I asked Levi “Who do you love?” Let’s see if you can understand his response:

Levi, the boy with paralyzed vocal cords is speaking clearly and loudly!!! He said “I love my dad alot alot.” When they first gave us his diagnosis when he was one week old they warned us that he would likely not have a voice, and if he did it would be very quiet.

God is so good!

The jealousy bug has infested our house. If anyone or anything is stealing my attention away from Levi he is sure to make his presence known.

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Malachi actually thinks it is funny to hear Levi whine so he encourages the jealousy in his own silent way, making sure to steal lots of kisses when he is sitting with me and Levi is watching close by.

We had a week packed with appointments and Tuesday was our full day. At 11:30 the night before Malachi was still wide awake so I did what all good parents do and I bribed him. I told him that if he went to bed and slept until the sun came up that I would take him for pancakes. He has still been locked in on the 4:04am wake up time and I knew I wouldn’t survive Tuesday’s long day with the tiny chunk of sleep. I explained to him that if he woke up and couldn’t see the light that he needed to be a big boy and close his eyes again.

Jake laughed at my bribe and rolled his eyes. But Malachi stayed asleep until 5:45!! When I went in to get him out of bed after he woke up he was giddy and squealing with excitement. The sun wasn’t technically up but he knew he had lasted longer than normal so we still sprung for pancakes with lots of butter and syrup. Side note- no one warned me how nasty toddlers can get when dealing with syrup. YUCK!

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Our regular therapist is out of town but thankfully the woman taking her place is Malachi’s hippotherapist and both the boys know and love her.

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We knocked out a few more soccer games.

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And I played with a new phone camera a bit and got some sweet pictures of the kids.

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And one of dad just for the fun of it!

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Jake and I are what the youth group teens call “old school”. We use things until they stop working, regardless of how uncool or outdated they may be. I have been using a very old iphone for years but it still worked just fine so I didn’t see a need to swap it out. But over the last two weeks it has been declining FAST, and this week it met it’s end and had to be replaced. But I will say that the photo quality is such a nice upgrade!

Levi has been working on trying new foods and has really enjoyed playing with fruit. We got him to suck on an apple slice which is big considering his oral aversions!

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This weekend I had the privilege of attending a ladies conference in Alabama with a group of women from my church. Aside from the youth group lock-ins, I do not spend the night away from the boys.

Like any trip, it had positives and negatives. Some people from our group had to back out at the last minute leaving we with a room all to myself! It was so nice to just alone in a room, as crazy as that sounds. I really enjoyed getting the chance to spend quality time with my church friends and get to know some of the new ladies that came along.

It was also refreshing to be able to be spiritually fed. Since we are on staff at our church, almost every service time we are expected to be doing something with the youth. Sunday mornings during service is our time to get spiritually challenged but with Levi’s attention span I can’t stay in the service. I listen to it over the speaker in the lobby but get easily distracted so the focused God time was appreciated.

As for the negatives, I forgot how big crowds freak me out. There are so many germs floating around the room and since it was a ladies conference they would stop and do meet and greets way more than normal. My friends understood my germ fears and were respectful but not before a few strangers leaned in for some big bear hugs AHHHH.

While having a hotel room to myself for a night was wonderful in so many ways, it gave me a few PTSD flashbacks that I didn’t see coming. When I laid my head on my pillow and closed my eyes I automatically drifted to the memory of the night Levi was born. Jake had to take Malachi back to the house and I was alone. Levi had already been transferred to another hospital and I was spending the night without either of my children. I remember the tears coming as I heard other moms in the rooms next to me talking excitedly about their crying baby. And there I was, alone with a fresh surgery scar and no baby to show for it. That feeling of disappointment and desperation is something that I will never forget and hit me like a wave this weekend.

But it truly was wonderful to get away for a bit and take a deep breath. I am thankful that Jake was willing and able to keep the kids so I could focus on God.

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I really thought I could do it this week. I was so hopeful that I could successfully go to the eye doctor with Levi and not cry a single tear. But once you have attached an emotion to a particular place and building, it makes it harder to sever those habits.

I gave myself a quick pep talk and wheeled the boys in for the appointment. I think the devil saw my confidence and decided to attack in the waiting room. As I looked around at the other families waiting for their turn I noticed that literally every child in there had a support group with them….both parents, some even also had grandparents….and I started to feel sorry for myself (oh the stinking devil is quick to attack).

Between the two boys we have too many appointments for Jake to even consider taking a day off to attend each one. We are very protective of taking unnecessary days off just in case there is a medical emergency that might take him out of the classroom for weeks.

I could ask grandparents or friends to come along, but to be completely truthful that adds a different stress element to the day. We live so minute to minute and many appointment days cause me to be a stressful bundle of nerves. Adding another adult personality into the mix isn’t worth it from a mental sanity perspective. My decision, but for some reason I was still jealous of all these other eye appointment families/cheerleaders.

The appointment itself went well with no further bad news or surgeries needed. He said that the patching we have been fighting Levi to do seems to be helping but we are looking at having to do two hours of patching daily for the next several years. Hearing all of those facts again set me into that dark place I hate to go to.

I was fighting back tears for the second half of the appointment and when I made it to the car I unleashed those bottled up emotions. I cried as we drove home, mourning over the motherhood picture I was yet again having to modify.

I spend a lot of time each week in the car. Our specialist appointments are all an hour away and our therapies are a thirty minute drive each way. I spend every second of the drive listening to worship music and singing at the top of my lungs.

As I drove down the highway, tears streaming down my face, a song came on that I had heard many times before. But this time was different.

The song is called “Nothing Else” by Cody Carnes and the first line was like a reset button for my hurting heart:

I’m caught up in Your presence
I just want to sit here at Your feet
I’m caught up in this holy moment
I never want to leave
Oh, I’m not here for blessings
Jesus, You don’t owe me anything
More than anything that You can do
I just want You
I had such a visual of me sitting at the feet of God with my tears landing on His feet.
I have visualized this scene so many times, and each time before I have been begging God for something. For Malachi’s life to be spared, for Levi’s healing, for answers, for courage.
But this time was different. I just needed a place to land and mourn. I needed a safe place to let the tears flow. And as I entered that throne room of God I felt his presence. I didn’t want to ask Him for anything, but simply craved being in the presence of someone that understood my struggles and my challenges.
Hebrews 4:16 says “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Why is it that I wait for a total breakdown to enter into God’s presence? Why is it that I wait until I need to beg for miracles before I go into the throne room of God?
Like the song states: I’m not here for blessings. Jesus, you don’t owe me anything.I just want You.
I have been personally challenged to enter with the confidence that Hebrews refers to. I know my God is a good God. I know He longs to hear my fears, disappointments, and desperation. And He longs to offer his grace to me in those moments.
But my pride gets in the way and keeps me from entering into His presence as much as I should. I use it as a last resort rather than a first reaction….like somehow God’s grace for me is already portioned out and might be wasted on situations that are fixable by me.
So I am praying for more throne room moments. I am praying for more confidence. I am praying that when my heart is hurting I can remember that His grace, His free and beautiful grace is more than enough for me.
I am literally going cross eyed- I wish I had a hidden camera on me so you all could laugh with me at the number of times I have had to jerk my head up and delete a string of nonsense my fingers have typed while I slept. The kids are officially asleep so I am heading that way, but thank you for taking the time to read up on my boys.
Much love,
Leah